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NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
Goodreads Choice Award
Nominee for Readers' Favorite Science & Technology (2015)Going back to the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives.
Along the way, he reveals the untold story of Hans Asperger, the father of Asperger’s syndrome, whose “little professors” were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of "neurodiversity" activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.
Along the way, he reveals the untold story of Hans Asperger, the father of Asperger’s syndrome, whose “little professors” were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of "neurodiversity" activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.
477 pages, Hardcover
First published August 1, 2015
About the author
Steve Silberman
23 books287 followersSteve Silberman was an American writer for Wired magazine and was an editor and contributor there for more than two decades. In 2010, Silberman was awarded the AAAS "Kavli Science Journalism Award for Magazine Writing." His featured article, known as "The Placebo Problem", discussed the impact of placebos on the pharmaceutical industry.
Silberman's 2015 book Neurotribes, which discusses the autism rights and neurodiversity movements, was awarded the Samuel Johnson Prize. Additionally, Silberman's Wired article "The Geek Syndrome", which focused on autism in Silicon Valley, has been referenced by many sources and has been described as a culturally significant article for the autism community.
Silberman's Twitter account made Time magazine's list of the best Twitter feeds for the year 2011.
In 2016, he gave the keynote address at the United Nations on World Autism Awareness Day.
Silberman's 2015 book Neurotribes, which discusses the autism rights and neurodiversity movements, was awarded the Samuel Johnson Prize. Additionally, Silberman's Wired article "The Geek Syndrome", which focused on autism in Silicon Valley, has been referenced by many sources and has been described as a culturally significant article for the autism community.
Silberman's Twitter account made Time magazine's list of the best Twitter feeds for the year 2011.
In 2016, he gave the keynote address at the United Nations on World Autism Awareness Day.
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Displaying 1 - 30 of 2,152 reviews
September 3, 2023
First of all, I thought that this book really needed a timeline in addition to its thorough notes and index, so I spent an afternoon going through the book making one myself. Command or Shift click here to read it in a new tab. (Commenting permission is open on it if you find any mistakes.)
Quick story from when I worked at Google: James Watson, the co-discoverer of DNA, was speaking at a Google event. He talked about a wide variety of topics on genetics, and I remember he lumped in autism and Aspergers with some other genetic disorders.
At the Q&A period after his talk, several developers took the microphone, identified themselves as having Aspergers, and gave him an earful about how they were glad that they had Aspergers because it made them better developers, gave them a unique perspective on life, and that they really didn’t appreciate him looking for a cure thank you very much.
My reactions were 1. C’mon guys, this is the co-discoverer of DNA. Show some respect. 2. Wow, I guess the stereotype is true.
Eight years later, my views on autism are somewhat more nuanced. And in the meantime Dr. Watson has had to auction off his Nobel prize to supplement lost income after some very unfortunate comments about the people of Africa.
Neurotribes is a very important book, albeit a thick one. Don’t let the 500 pages plus notes and index scare you. It is extremely readable, and I finished it in less than a week. I don’t know if it will become the “it” book of popular science this fall, but it certainly deserves to.
That there are so many controversies swirling around autism, diagnosing it, what causes it, whether we should focus on what causes it, etc., and that there is a bunch of stigma in general around autism, is why this book is so needed.
And it is very even handed, almost frustratingly so. I saw one reviewer who was very upset that Jenny McCarthy was mentioned without being immediately condemned. And she wanted Jim Carrey condemned too for good measure.
Look lady, I understand your frustration with anti-vaxxers, but I’m not wading through a 500-page polemic on any topic. And I’m willing to bet that if Mr. Silberman went after the supplement cure guys similarly, you would have been offended in a different way. (Like I said, controversies abound.)
Instead, Mr. Silberman patiently moves through the history of autism, starting in Vienna (Asperger), moving to Baltimore (Kanner), then Southern California (Rimland and Lovaas), then over to England (Lorna Wing). The pieces start to fit together. You start to get something more valuable than the satisfaction of having the other side condemned: historical context.
So if someone tells you that there is an epidemic of autism, you can point them to this book or Mr. Silberman’s TED talk. Or you can just net it out for them like this: To help kids get services they needed, diagnostic criteria was widened. At the same time standardized diagnostic tools became available for the first time. As these changes filtered through the psychiatric community, the number of diagnoses increased. As far as can be determined, the number of autistic people — kids and adults — has remained fairly constant.
And if someone tells you that vaccines cause autism, point them to this book or TED talk too. Optionally box their ears. That part is up to you.
Actually, I reluctantly take back the ear boxing because with the benefit of historical context, and after seeing just how twisted and jacked up the history of autism is, it’s easy to sympathize with parents in the absence of any leadership or even coherent guidance from the medical establishment. Who can blame them for trying to take matters in to their own hands? (I was prescribed Vioxx after Merck knew about the risks, so I’m no pal of Big Pharma either.)
Unfortunately, rigorous adherence to statistical tests and being a concerned parent dealing with an n of 1 are pretty much mutually exclusive. Combine that with the Baby Boomer’s reflexive distrust of authority, and things like the anti-vax movement and autism clusters seem almost inevitable. (Though it’s clear from this book that the roots of the anti-vax movement go back almost two decades before Wakefield’s notorious paper.)
Mr. Silberman wisely shows this effect in action with a highly educated Bay Area couple that go through several stages on their journey in raising their autistic son with various stops including being against vaccines, megadoses of multivitamins, ABA therapy, and even considering intravenous chelation. I get it now. Walk a mile in their shoes before you judge, or Jenny McCarthy’s, dangerous though she may be.
It’s much harder to be sympathetic to the medical establishment, especially the Freudians, whose insights always sound like the worst writer in an a short story workshop. But it’s the Behaviorists who win the One Flew Over The Cuckoo’s Nest prize hands down. Dante’s pope-feet burning-thingie is awaiting you, Dr. Lovaas.
It turns out that groups of parents are much more effective at advocacy than medicine. And that’s where the story ticks upward towards hope. Groups are formed. Laws are passed. Services are provided.
Again, with the benefit of historical context, I know that eventually a major schism forms with one group focusing on advocacy and another focusing on a cure. The latter is important to understand to be sure, but let’s leave that to the scientists.
The parts of the book about advocacy are really interesting to me because I know how hard it is to get accommodations, even in a supposedly good school system. It gets even more interesting when autistic people find each other through newsletters then the Internet and start advocating for themselves and the concept of neurodiversity, which brings us to the Google developers who so confidently questioned a famous scientist.
Maybe the neurotypicals are really the problem here, taking the autistic world’s scientific breakthroughs and life-changing applications for granted.
Let's face it. We live in a world where a scientific team lands a space probe on a comet going through space at 55kmph, and most of the news coverage is about the damn shirt the lead scientist wore. And just this week a kid brings a pencil box full of wires and electronics into his school in hopes of starting an engineering club, obliviously shows it to a teacher, and winds up handcuffed by five police officers “for his protection.” It’s like the X-men, but with superpowers that we can only guess at.
Highest recommendation, especially for parents.
Mr. Silberman is a wonderful writer, and his prose goes down easy, but Gibbon is even better and to date I haven’t been able to get anyone to read Decline and Fall of the Roman Empire.
While I appreciated all the background, I would love to have an abridged version to share with less motivated readers. I mean this book is so thorough that I was expecting a chapter just on fans of Gary Neumann. “Here in my car. I feel safest of all. I can lock all my doors. It’s the only way to live. In cars…”
Quick story from when I worked at Google: James Watson, the co-discoverer of DNA, was speaking at a Google event. He talked about a wide variety of topics on genetics, and I remember he lumped in autism and Aspergers with some other genetic disorders.
At the Q&A period after his talk, several developers took the microphone, identified themselves as having Aspergers, and gave him an earful about how they were glad that they had Aspergers because it made them better developers, gave them a unique perspective on life, and that they really didn’t appreciate him looking for a cure thank you very much.
My reactions were 1. C’mon guys, this is the co-discoverer of DNA. Show some respect. 2. Wow, I guess the stereotype is true.
Eight years later, my views on autism are somewhat more nuanced. And in the meantime Dr. Watson has had to auction off his Nobel prize to supplement lost income after some very unfortunate comments about the people of Africa.
Neurotribes is a very important book, albeit a thick one. Don’t let the 500 pages plus notes and index scare you. It is extremely readable, and I finished it in less than a week. I don’t know if it will become the “it” book of popular science this fall, but it certainly deserves to.
That there are so many controversies swirling around autism, diagnosing it, what causes it, whether we should focus on what causes it, etc., and that there is a bunch of stigma in general around autism, is why this book is so needed.
And it is very even handed, almost frustratingly so. I saw one reviewer who was very upset that Jenny McCarthy was mentioned without being immediately condemned. And she wanted Jim Carrey condemned too for good measure.
Look lady, I understand your frustration with anti-vaxxers, but I’m not wading through a 500-page polemic on any topic. And I’m willing to bet that if Mr. Silberman went after the supplement cure guys similarly, you would have been offended in a different way. (Like I said, controversies abound.)
Instead, Mr. Silberman patiently moves through the history of autism, starting in Vienna (Asperger), moving to Baltimore (Kanner), then Southern California (Rimland and Lovaas), then over to England (Lorna Wing). The pieces start to fit together. You start to get something more valuable than the satisfaction of having the other side condemned: historical context.
So if someone tells you that there is an epidemic of autism, you can point them to this book or Mr. Silberman’s TED talk. Or you can just net it out for them like this: To help kids get services they needed, diagnostic criteria was widened. At the same time standardized diagnostic tools became available for the first time. As these changes filtered through the psychiatric community, the number of diagnoses increased. As far as can be determined, the number of autistic people — kids and adults — has remained fairly constant.
And if someone tells you that vaccines cause autism, point them to this book or TED talk too. Optionally box their ears. That part is up to you.
Actually, I reluctantly take back the ear boxing because with the benefit of historical context, and after seeing just how twisted and jacked up the history of autism is, it’s easy to sympathize with parents in the absence of any leadership or even coherent guidance from the medical establishment. Who can blame them for trying to take matters in to their own hands? (I was prescribed Vioxx after Merck knew about the risks, so I’m no pal of Big Pharma either.)
Unfortunately, rigorous adherence to statistical tests and being a concerned parent dealing with an n of 1 are pretty much mutually exclusive. Combine that with the Baby Boomer’s reflexive distrust of authority, and things like the anti-vax movement and autism clusters seem almost inevitable. (Though it’s clear from this book that the roots of the anti-vax movement go back almost two decades before Wakefield’s notorious paper.)
Mr. Silberman wisely shows this effect in action with a highly educated Bay Area couple that go through several stages on their journey in raising their autistic son with various stops including being against vaccines, megadoses of multivitamins, ABA therapy, and even considering intravenous chelation. I get it now. Walk a mile in their shoes before you judge, or Jenny McCarthy’s, dangerous though she may be.
It’s much harder to be sympathetic to the medical establishment, especially the Freudians, whose insights always sound like the worst writer in an a short story workshop. But it’s the Behaviorists who win the One Flew Over The Cuckoo’s Nest prize hands down. Dante’s pope-feet burning-thingie is awaiting you, Dr. Lovaas.
It turns out that groups of parents are much more effective at advocacy than medicine. And that’s where the story ticks upward towards hope. Groups are formed. Laws are passed. Services are provided.
Again, with the benefit of historical context, I know that eventually a major schism forms with one group focusing on advocacy and another focusing on a cure. The latter is important to understand to be sure, but let’s leave that to the scientists.
The parts of the book about advocacy are really interesting to me because I know how hard it is to get accommodations, even in a supposedly good school system. It gets even more interesting when autistic people find each other through newsletters then the Internet and start advocating for themselves and the concept of neurodiversity, which brings us to the Google developers who so confidently questioned a famous scientist.
Maybe the neurotypicals are really the problem here, taking the autistic world’s scientific breakthroughs and life-changing applications for granted.
Let's face it. We live in a world where a scientific team lands a space probe on a comet going through space at 55kmph, and most of the news coverage is about the damn shirt the lead scientist wore. And just this week a kid brings a pencil box full of wires and electronics into his school in hopes of starting an engineering club, obliviously shows it to a teacher, and winds up handcuffed by five police officers “for his protection.” It’s like the X-men, but with superpowers that we can only guess at.
Highest recommendation, especially for parents.
Mr. Silberman is a wonderful writer, and his prose goes down easy, but Gibbon is even better and to date I haven’t been able to get anyone to read Decline and Fall of the Roman Empire.
While I appreciated all the background, I would love to have an abridged version to share with less motivated readers. I mean this book is so thorough that I was expecting a chapter just on fans of Gary Neumann. “Here in my car. I feel safest of all. I can lock all my doors. It’s the only way to live. In cars…”
February 9, 2017
Finished. Very long review. Apologies. Skip to paragraph 3 ** for a horror story. The book was hard to rate. Some of it is as bad as a 1-star: excreble writing when he's giving far too much detail about the irrelevant (to the book) discoveries of the 18thC scientist Henry Cavendish whom he confidently diagnoses as Aspergers. 3 stars for most of it where the research is general too narrowly focused on too few people but quite in depth for them and 5 stars for giving away such appalling things as the typo in DSM III.
People forget that DSM is a for-profit company. It made $10M on DSM III. It had 25 committees of people searching for evidence of at least 25 different symptoms of autism. They were well paid as professionals. They consulted all kinds of people from teachers to those therapists qualified by attendance at a day's seminar in some hotel ballroom. In other words, everyone involved had a pecuniary interest in diagnosing autism in as broad a way as possible.
** But to the terrible typo. For those who might be autistic or have aspergers or might not but definitely seemed to have something, there was always PDD-NOS. The intention was that children being diagnosed would have a certain number of symptoms from list A, from list B and list C. However, instead of 'and' the word 'or' was substituted. The author reckons that 75% of all children diagnosed with PDD-NOS didn't in fact have anything.
Hans Asperger said, a long time ago and his words have been nearly forgotten, trampled on and now totally ignored, not to pathologise eccentricities! Just because someone is weird doesn't make them mental! Forget that, they're all on the spectrum now.
I was going to write a long and well-argued (hopefully) review of the book and of own my own opinion that Aspergers and Autism are not related at all. But I'll keep that for another time and stick to reviewing the book . I do think that a lot of children so diagnosed don't have autism at all and grow out of it (or according to many therapists are 'cured') in much the same way that 90% or more of the kiddies put on Ritalin turned out to be normal adults. The incidence of ADHD in America in children is higher than anywhere else in the world. But the figures for adults are more or less the same in all the countries of the West.
By all evidence that I've seen and read, Aspergers is most often just a personality type, that is unless you want to diagnose almost the entirety of Silicon Valley and perhaps computer people in general with having it. Would we even be so advanced in electronics without these people? In any case, quite a few of the 'symptoms' of Aspergers are common to Prosopagnosia or face-blindness (I have it so I know) which is only just being recognised and most people with it just think they are bad at remembering people, but there is more to it than that.
If a child has hobbies he is really into, he's encouraged and parents' say things like, 'the way he's always taking apart things, you could see he's going to be an engineer'. If a child would rather just play with one good friend, then that friend gets invited over more for tea and parents' say he's a bit of a loner. If the child is really good at maths, parents praise him. But once he has a diagnosis of autism, suddenly he's not got a hobby he's mad keen on, no that's perseveration, his kind of sociability is now inability to communicate, his ability with maths is an unhealthy autistic obsession. And so it goes... It's a self-fulfilling diagnosis.
So overall, it's quite a good book on the history of the diagnosis of Austism and relatively recently, Aspergers. But it isn't really about Neurotribes at all.
A final thought. If we stopped thinking of neurotypical people as normal but thought of them as the most common personality type, or the most usual, then those who were different would not be abnormal, but unusual, rare or even, as say A+ is in the world of blood groups, just uncommon. There would still be those who were definitely abnormal, Autism wouldn't go away, but people who are different wouldn't be labelled and if there were enough of them in each group, might get special ed. As in - a group of nerdy loners that don't like playing games in the playground, could be taught together in their favourite academic subjects and everyone would be a winner. Teachers, children and society. In any case it's better than making them depressed and feeling bad about not fitting in by labelling them abnormal.
Notes on reading the book
People forget that DSM is a for-profit company. It made $10M on DSM III. It had 25 committees of people searching for evidence of at least 25 different symptoms of autism. They were well paid as professionals. They consulted all kinds of people from teachers to those therapists qualified by attendance at a day's seminar in some hotel ballroom. In other words, everyone involved had a pecuniary interest in diagnosing autism in as broad a way as possible.
** But to the terrible typo. For those who might be autistic or have aspergers or might not but definitely seemed to have something, there was always PDD-NOS. The intention was that children being diagnosed would have a certain number of symptoms from list A, from list B and list C. However, instead of 'and' the word 'or' was substituted. The author reckons that 75% of all children diagnosed with PDD-NOS didn't in fact have anything.
Hans Asperger said, a long time ago and his words have been nearly forgotten, trampled on and now totally ignored, not to pathologise eccentricities! Just because someone is weird doesn't make them mental! Forget that, they're all on the spectrum now.
I was going to write a long and well-argued (hopefully) review of the book and of own my own opinion that Aspergers and Autism are not related at all. But I'll keep that for another time and stick to reviewing the book . I do think that a lot of children so diagnosed don't have autism at all and grow out of it (or according to many therapists are 'cured') in much the same way that 90% or more of the kiddies put on Ritalin turned out to be normal adults. The incidence of ADHD in America in children is higher than anywhere else in the world. But the figures for adults are more or less the same in all the countries of the West.
By all evidence that I've seen and read, Aspergers is most often just a personality type, that is unless you want to diagnose almost the entirety of Silicon Valley and perhaps computer people in general with having it. Would we even be so advanced in electronics without these people? In any case, quite a few of the 'symptoms' of Aspergers are common to Prosopagnosia or face-blindness (I have it so I know) which is only just being recognised and most people with it just think they are bad at remembering people, but there is more to it than that.
If a child has hobbies he is really into, he's encouraged and parents' say things like, 'the way he's always taking apart things, you could see he's going to be an engineer'. If a child would rather just play with one good friend, then that friend gets invited over more for tea and parents' say he's a bit of a loner. If the child is really good at maths, parents praise him. But once he has a diagnosis of autism, suddenly he's not got a hobby he's mad keen on, no that's perseveration, his kind of sociability is now inability to communicate, his ability with maths is an unhealthy autistic obsession. And so it goes... It's a self-fulfilling diagnosis.
So overall, it's quite a good book on the history of the diagnosis of Austism and relatively recently, Aspergers. But it isn't really about Neurotribes at all.
A final thought. If we stopped thinking of neurotypical people as normal but thought of them as the most common personality type, or the most usual, then those who were different would not be abnormal, but unusual, rare or even, as say A+ is in the world of blood groups, just uncommon. There would still be those who were definitely abnormal, Autism wouldn't go away, but people who are different wouldn't be labelled and if there were enough of them in each group, might get special ed. As in - a group of nerdy loners that don't like playing games in the playground, could be taught together in their favourite academic subjects and everyone would be a winner. Teachers, children and society. In any case it's better than making them depressed and feeling bad about not fitting in by labelling them abnormal.
Notes on reading the book
August 29, 2015
I received this book through the LibraryThing Early Reviewers Program, and I'm very glad I did. As the mother of an autistic child, the subject matter of autism is very personal for me.
NeuroTribes was educational and affirming. I was genuinely astonished at how enjoyable the book was, long-winded though it is at times (my early reviewer copy is just under 500 pages). Silberman writes about subjects that are horrible, but they are necessary matters to address: Hans Asperger's insights made within the context of Nazi-controlled Austria, the institutionalization of children (often labeled imbeciles and/or schizoid), and the abusive nature of many "therapies" in the past fifty years, up to the present day. There's also the vital topic of the vaccines-cause-autism debacle, which he saves for near the end. However, the book is not all grim and dire. There's wonderful brightness through the middle of the book as he addresses the importance of science fiction, fandom, and the internet within the autistic community. There is even a section on the movie Rain Man and how that changed public perception. The end of the book is extremely positive as it shows how autistics are now empowered, and that many of them are fully capable of finding their own place in the world.
I love Silberman's approach to this. Honestly, I cheered aloud. I have really been appalled by the stance of Autism Speaks and the emphasis on finding a source or cure for autism, rather than on how to serve the kids AND adults who need help now. The overall message of the book is that there is no autism epidemic. Autism has always existed. That different manner of thought has been essential to our survival as a species. Only now, it is diagnosed in a very specific way, and autistics are not hidden from society.
If you have any interest in the history of autism research, I really, really recommend this. It's a challenging read at times, but it's also full of hope and potential. I look at my son and I see that hope and potential, too.
NeuroTribes was educational and affirming. I was genuinely astonished at how enjoyable the book was, long-winded though it is at times (my early reviewer copy is just under 500 pages). Silberman writes about subjects that are horrible, but they are necessary matters to address: Hans Asperger's insights made within the context of Nazi-controlled Austria, the institutionalization of children (often labeled imbeciles and/or schizoid), and the abusive nature of many "therapies" in the past fifty years, up to the present day. There's also the vital topic of the vaccines-cause-autism debacle, which he saves for near the end. However, the book is not all grim and dire. There's wonderful brightness through the middle of the book as he addresses the importance of science fiction, fandom, and the internet within the autistic community. There is even a section on the movie Rain Man and how that changed public perception. The end of the book is extremely positive as it shows how autistics are now empowered, and that many of them are fully capable of finding their own place in the world.
I love Silberman's approach to this. Honestly, I cheered aloud. I have really been appalled by the stance of Autism Speaks and the emphasis on finding a source or cure for autism, rather than on how to serve the kids AND adults who need help now. The overall message of the book is that there is no autism epidemic. Autism has always existed. That different manner of thought has been essential to our survival as a species. Only now, it is diagnosed in a very specific way, and autistics are not hidden from society.
If you have any interest in the history of autism research, I really, really recommend this. It's a challenging read at times, but it's also full of hope and potential. I look at my son and I see that hope and potential, too.
December 23, 2015
I read this book a couple of months ago, but only got around to reviewing it now. As a parent of multiple kids with autism I had been very eager to get hold of copy, especially as from the reviews I had read it seemed the author must have read my mind before he set out to read the book. The premise that autism has always been with us, that vaccines do not cause autism, there is no epidemic and that the rise in the number of diagnoses is a direct result of changes in diagnostic criteria, is one I already held. I read the book very quickly and after the first few chapters I was enthralled and was recommending the book to all I knew.
However, by the time I got to the end of the book my opinion had changed. I still like the book, I still recommend the book, but with a caveat. I am the mother of four kids with autism. They range in severity from 'mild/level 1' (ie formerly Asperger's Syndrome) to 'severe, level 3'. I felt that the book started by giving an idea of range of autism from severe to mild and that severe cases were often mislabeled as ID and that mild cases were overlooked entirely. I also began to dislike the undertones in the book that suggested autism=great because look how useful high functioning/mildly autistic/Asperger's types can be! As the book went on I felt the author's focus left the ID and autistic or purely severely autistic kids and adults behind. The focus was on how people with high functioning autism can thrive and lead successful industries and so forth. That's a useful story to tell, but I felt it was interesting that the author began by seemingly bringing autism out of the shadows of history only to hide the lowest functioning members behind the shadows of the high functioning members of the community. They simply disappeared from his narrative. What happens to ID autistic adults in the modern world? Where do they live? Where does the low functioning teenager live? What happens to the 'mild' adults who regress or so forth?
By the time the book ended I felt it put a nice glossy sheen over the lives of people with autism. This obscured the real struggles faced by people all the spectrum and by those who care for them and want the best for them. I was saddened by the underlying narrative that the of people with autism are worthwhile because of what they contribute rather than simply stating that people with autism are worthwhile because they are people, regardless of how useful they are to the rest of us.
However, by the time I got to the end of the book my opinion had changed. I still like the book, I still recommend the book, but with a caveat. I am the mother of four kids with autism. They range in severity from 'mild/level 1' (ie formerly Asperger's Syndrome) to 'severe, level 3'. I felt that the book started by giving an idea of range of autism from severe to mild and that severe cases were often mislabeled as ID and that mild cases were overlooked entirely. I also began to dislike the undertones in the book that suggested autism=great because look how useful high functioning/mildly autistic/Asperger's types can be! As the book went on I felt the author's focus left the ID and autistic or purely severely autistic kids and adults behind. The focus was on how people with high functioning autism can thrive and lead successful industries and so forth. That's a useful story to tell, but I felt it was interesting that the author began by seemingly bringing autism out of the shadows of history only to hide the lowest functioning members behind the shadows of the high functioning members of the community. They simply disappeared from his narrative. What happens to ID autistic adults in the modern world? Where do they live? Where does the low functioning teenager live? What happens to the 'mild' adults who regress or so forth?
By the time the book ended I felt it put a nice glossy sheen over the lives of people with autism. This obscured the real struggles faced by people all the spectrum and by those who care for them and want the best for them. I was saddened by the underlying narrative that the of people with autism are worthwhile because of what they contribute rather than simply stating that people with autism are worthwhile because they are people, regardless of how useful they are to the rest of us.
May 29, 2022
what even is this book
I'm still amazed a book supposedly about 'neurotribes' had so few autistic people in it. Until the very last two chapters it's all parents and doctors sharing alternately horror stories and inspiration porn of autistic children. Just what.
Silberman goes into loving gory detail about the historical treatment of neurodivergent children but fails to show us anything from the perspective of autistic people themselves. They appear only in excerpts from case notes and accounts by allistic caregivers or medical professionals, and occasionally extracts from Temple Grandin's books. He also seems really intent on rehabilitating Asperger, making him out to be a romantic kindly genius who also happened to be a Nazi. The book often brings up a widespread and harmful misconception of autism - like the link to vaccines, or eugenicist ideas - and then justifies them with something like 'he had good reason to think so'. Did he? Did he really? (No, he didn't.)
It's also such a white book, with nothing more than a passing mention of 'people of colour'. It's focused on autism history in the USA and Europe (mainly Vienna, with a few mentions of Sweden) only. There's a cutesy anecdote early on from a white autism mom who takes a trip to Ghana and is inspired by the vibrant colours and resilient spirit of disabled people there to devote herself to saviourism, and that is about the extent to which this book considers race with respect to neurodivergence. Thanks Steve.
It has a little more detail about gender and how autistic girls are often overlooked, but it's so brief before he goes back to fanboying over the Silicon Valley techbro geniuses. There is a whole chapter devoted to the making of Rain Man, with some rather horrifying behind the scenes 'fun facts' and nothing at all about queer autistic people.
I'm so confused who this book is meant for. I can't think of any autistic people I would recommend it to. Would parents of autistic children find this helpful? Idk I think it would only reinforce ableist beliefs if they even make it past the graphic sections of experiments and 'treatments'. Oliver Sacks, why did you betray me like this with your glowing foreword.
The last two chapters finally gave me what I was looking for: autistic people in their own words. It is still a rather limited selection but it's the best (or only good) part of the book. Ugh can't believe I spent so much time reading close to 600 pages of meandering nonsense (the audiobook is 18 hours long, but at least you can put that on 2x speed).
I'm still amazed a book supposedly about 'neurotribes' had so few autistic people in it. Until the very last two chapters it's all parents and doctors sharing alternately horror stories and inspiration porn of autistic children. Just what.
Silberman goes into loving gory detail about the historical treatment of neurodivergent children but fails to show us anything from the perspective of autistic people themselves. They appear only in excerpts from case notes and accounts by allistic caregivers or medical professionals, and occasionally extracts from Temple Grandin's books. He also seems really intent on rehabilitating Asperger, making him out to be a romantic kindly genius who also happened to be a Nazi. The book often brings up a widespread and harmful misconception of autism - like the link to vaccines, or eugenicist ideas - and then justifies them with something like 'he had good reason to think so'. Did he? Did he really? (No, he didn't.)
It's also such a white book, with nothing more than a passing mention of 'people of colour'. It's focused on autism history in the USA and Europe (mainly Vienna, with a few mentions of Sweden) only. There's a cutesy anecdote early on from a white autism mom who takes a trip to Ghana and is inspired by the vibrant colours and resilient spirit of disabled people there to devote herself to saviourism, and that is about the extent to which this book considers race with respect to neurodivergence. Thanks Steve.
It has a little more detail about gender and how autistic girls are often overlooked, but it's so brief before he goes back to fanboying over the Silicon Valley techbro geniuses. There is a whole chapter devoted to the making of Rain Man, with some rather horrifying behind the scenes 'fun facts' and nothing at all about queer autistic people.
I'm so confused who this book is meant for. I can't think of any autistic people I would recommend it to. Would parents of autistic children find this helpful? Idk I think it would only reinforce ableist beliefs if they even make it past the graphic sections of experiments and 'treatments'. Oliver Sacks, why did you betray me like this with your glowing foreword.
The last two chapters finally gave me what I was looking for: autistic people in their own words. It is still a rather limited selection but it's the best (or only good) part of the book. Ugh can't believe I spent so much time reading close to 600 pages of meandering nonsense (the audiobook is 18 hours long, but at least you can put that on 2x speed).
June 22, 2020
This book is a breath of fresh air. As someone on the autism spectrum, it is nice to hear from someone that isn’t on the autism spectrum make the argument that I’m not an accident and that people with autism have been around for centuries. I’ve been to a conference where the author spoke and I’m glad I got this book years after hearing it. I hope many parents read this to get rid of the stigma surrounding autism!
December 13, 2021
This will be the longest book review I've written but I have a lot of thoughts and feelings about this book that I need to write down so I remember why I will never recommend it to anyone. I don't understand where all the high reviews come from!
I was actually really excited for this book since it was first published and was looking forward to reading it (listening to the audiobook) as part of my bookclub. I was immediately engaged in the introduction, and then it all went downhill from there. I was expecting to read about a brief history of autism and then more about a hopeful future with new research and ways for society to better embrace and support neurodiversity. However, this is actually just a long history book reviewing how autism was "discovered" and developed into the diagnosis we know it today, with a very short section at the end considering the future. The history content provided a dispassionate description of the humiliation, mistreatment, abuse, torture, and murder of autistic children and adults - I felt physically ill while listening to the audiobook. Yes this history is important but I don't understand why there was so much emphasis on this and at this level of detail given the title, subtitle, and introduction of this book. The author also goes on long meandering tangents, sometimes providing the minute details of a researcher's daily life, while other times just breezing over much bigger topics. There seemed to be no real focus to the writing.
Although this read as a history book, it isn't even a true history of #actuallyautistic people - it's a whitewashed history of how other people have reacted to the existence of autistic people and also partial biographies on people the author thought might be autistic geniuses. Although the author highlights how Autism is a spectrum he doesn't really share stories about autistic people who are not geniuses and he primarily writes about white hetero cis autistic men and boys.
I was actually really excited for this book since it was first published and was looking forward to reading it (listening to the audiobook) as part of my bookclub. I was immediately engaged in the introduction, and then it all went downhill from there. I was expecting to read about a brief history of autism and then more about a hopeful future with new research and ways for society to better embrace and support neurodiversity. However, this is actually just a long history book reviewing how autism was "discovered" and developed into the diagnosis we know it today, with a very short section at the end considering the future. The history content provided a dispassionate description of the humiliation, mistreatment, abuse, torture, and murder of autistic children and adults - I felt physically ill while listening to the audiobook. Yes this history is important but I don't understand why there was so much emphasis on this and at this level of detail given the title, subtitle, and introduction of this book. The author also goes on long meandering tangents, sometimes providing the minute details of a researcher's daily life, while other times just breezing over much bigger topics. There seemed to be no real focus to the writing.
Although this read as a history book, it isn't even a true history of #actuallyautistic people - it's a whitewashed history of how other people have reacted to the existence of autistic people and also partial biographies on people the author thought might be autistic geniuses. Although the author highlights how Autism is a spectrum he doesn't really share stories about autistic people who are not geniuses and he primarily writes about white hetero cis autistic men and boys.
April 8, 2024
This could have been a 5 star read if there wasn't so. damn. much. detail. Everyone and anyone who had anything to do with autism research is probably mentioned in this book, along with their spouses and children and maybe even their dog.
Some of this was interesting, much of it was not.
I liked reading about the people who are/were on the spectrum and I enjoyed a little of the early stuff, such as Asperger's thoughts and research.
I love that the author shows that people on the spectrum have always been around and have contributed much to society, especially when it comes to technology of all kinds.
It could have been a much shorter book though. I don't care at all about the parents freaking out because their kid isn't who they thought they should be. I wish most of that had been edited out.
Favorite quote:
"Just because a computer is not running Windows doesn’t mean that it’s broken."
Some of this was interesting, much of it was not.
I liked reading about the people who are/were on the spectrum and I enjoyed a little of the early stuff, such as Asperger's thoughts and research.
I love that the author shows that people on the spectrum have always been around and have contributed much to society, especially when it comes to technology of all kinds.
It could have been a much shorter book though. I don't care at all about the parents freaking out because their kid isn't who they thought they should be. I wish most of that had been edited out.
Favorite quote:
"Just because a computer is not running Windows doesn’t mean that it’s broken."
April 10, 2019
This is a fascinating book about autism. The first part of the book focuses on the history of research into the syndrome. It describes how early researchers tried to formulate the causes of autism, including the pitifully sidetracked idea that cold parents are responsible for the syndrome. The book gives brief biographies of a few historical figures, including Henry Cavendish, Steve Jobs, Nikola Tesla and Mozart who are suspected of being autistic. Just try Googling "famous autistic people in history" and you will find an amazing list of inspiring historical figures who were probably autistic.
Our consciousness of autism was heightened immeasurably by the movie "Rain Man", starring Dustin Hoffman and Tom Cruise. After this movie was shown, people everywhere became aware of autism. However, the movie portrays a man who is at one end of the autistic spectrum, who could not possibly live independently. But the autism spectrum encompasses a broad range of capabilities, and high-end functioning autistic people are able to get along just fine.
In some cases, being autistic can assist one professionally. I think first and foremost about Professor Temple Grandin, who realized that her autism helped her to understand animal behavior. She was better able to design and engineer equipment for handling animals because of her unique insights. She has written several books (such as Thinking in Pictures, Expanded Edition and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior) and was celebrated in the terrific movie made about her.
The latter part of the book is about the controversies between those who think of autism as a disability, and those who think of autism as simply a different way of thinking and living. This is where the book becomes most interesting. The book also discusses why autism seems to be diagnosed more frequently now than in the past; this is largely due to the enlarging scope of its definition in the psychiatric literature.
I didn't read this book; I listened to the audiobook, as read by William Hughes. His narration is wonderful, and I definitely recommend it to those who enjoy listening to audiobooks.
Our consciousness of autism was heightened immeasurably by the movie "Rain Man", starring Dustin Hoffman and Tom Cruise. After this movie was shown, people everywhere became aware of autism. However, the movie portrays a man who is at one end of the autistic spectrum, who could not possibly live independently. But the autism spectrum encompasses a broad range of capabilities, and high-end functioning autistic people are able to get along just fine.
In some cases, being autistic can assist one professionally. I think first and foremost about Professor Temple Grandin, who realized that her autism helped her to understand animal behavior. She was better able to design and engineer equipment for handling animals because of her unique insights. She has written several books (such as Thinking in Pictures, Expanded Edition and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior) and was celebrated in the terrific movie made about her.
The latter part of the book is about the controversies between those who think of autism as a disability, and those who think of autism as simply a different way of thinking and living. This is where the book becomes most interesting. The book also discusses why autism seems to be diagnosed more frequently now than in the past; this is largely due to the enlarging scope of its definition in the psychiatric literature.
I didn't read this book; I listened to the audiobook, as read by William Hughes. His narration is wonderful, and I definitely recommend it to those who enjoy listening to audiobooks.
September 27, 2015
As a history of autism and its diagnosis, treatment, and social acceptance, this is a solid book. Could have used some more editing (the author often provides way too much detail on various players' bios and historical background. For example there's a good 30 pages devoted to a summary of the Nazi occupation of Austria, which was only tangentially related to the topic).
The blurbs on the jacket about it being "groundbreaking" and "radically alter[ing] the societal conversation" are hyperbolic at best. This is a straightforward history without much critical insight or new thoughts added to the mix. One of the reasons I originally picked this up was because the jacket mentioned it explores the concept of neurodiversity w/r/t to autism. But that "exploration" only crops up in the last 30 pages and is again just a superficial summary of what various other authors and organizations have already put forward.
The blurbs on the jacket about it being "groundbreaking" and "radically alter[ing] the societal conversation" are hyperbolic at best. This is a straightforward history without much critical insight or new thoughts added to the mix. One of the reasons I originally picked this up was because the jacket mentioned it explores the concept of neurodiversity w/r/t to autism. But that "exploration" only crops up in the last 30 pages and is again just a superficial summary of what various other authors and organizations have already put forward.
December 18, 2015
I'd never penalize a well-written book just because it wasn't something I expected to read but once you get past the techno-babble-y faux-portmanteau worded title NeuroTribes: The Legacy of Autism and The Future of Neurodiversity you kinda expect more than just a comprehensive history of autism. But that's essentially what this is. I knew from the get-go, when Steve Silberman (a tech journalist by trade) divulged his motive for writing the book (when two of his interviewees for a tech article both expressed the same concern about being interviewed at home: "I hope you don't mind that I have an autistic child at home") that this was going to be Silberman's exploration into a subject he was heretofore not at all versed in. For a lay observer, Silberman meticulously researched the topic (almost to the point of exhaustion). If you have an interest in autism, but know little about the topic, this book is probably for you. If you're a parent, though, and are already familiar with all the schools of thought (many of which being terribly faulty and have stalled or set back autism treatment for decades) then this book might prove to be.information overkill.
December 28, 2023
I wanted to like this book but I find myself deeply disappointed by it. I just don't think a book like this should've been written by an allistic (non-Autistic) person and I could go on forever about how many little bits rubbed me the wrong way. Here are a few things I noticed.
History books can be very politically powerful, and I think the best history books include strong analysis and discussion of the topics at hand alongside their historical context. This book has little to none of that and it's bizarre and unfortunate. Silberman provides a lot of historical information but doesn't DO anything with it. Nearly every chapter and section felt like it deserved elaboration on how it related to wider trends in autism knowledge at its time, discussion of how language and terminology have changed since its time, questions about ethics, conversation about how autistic people today are still impacted by historical trends, etc etc etc. Compared to the things i know I and my autistic circles could say about the history presented in this book, the author’s lack of practically any analysis made the history feel flat, hollow, and disconnected.
Silberman entirely dismisses Hans Asperger’s connections to Naziism, despite the fact that his actions directly caused the deaths of thousands of disabled people in the T4 program. This exclusion felt incredibly misguided especially as the contemporary opinion of many autistic people (INCLUDING MANY OF THOSE WHO HE REFERENCES NEAR THE END OF THE BOOK!) is that using Asperger’s name has deservedly fallen out of fashion.
There’s a substantial amount of history regarding ABA, but there is no acknowledgement that many A/autistic people who have been through ABA found it traumatizing and abusive. Although Silberman writes about various practices that, imo, SHOULD be viewed as abusive, i.e. electroshock, food and water deprivation, spanking and hitting, etc; he takes no stance on the morality of any of these practices. The most he does is call ABA controversial. So much for listening to Autistic people, many of whom condemn ABA as the abusive practice that it is.
I keep noticing two diverging categories of autism acceptance / inclusion. People seem to either argue that autistic people deserve support/recognition/love/etc because every single person does, or they heavily imply that autistic people deserve these things because “autism makes us better as a society” or “leads to innovation” or “some autistic people are, in fact, really smart!” I feel like the latter argument is majorly flawed. You should want to accept and love autistic people regardless of our intellect or contributions to the world — I do not believe that a marginalized group’s liberation should be contingent on how “useful” said group can be. Unsurprisingly, this book often makes arguments that fall into this latter category, and I found it really exhausting.
I did learn a few things about the history of autism, sure. But overall, so much of this book felt flat and devoid of any nuanced analysis that I KNOW an Autistic researcher would’ve been able to bring to it.
I don’t think many a/Autistic people would get much out of reading this. I certainly didn’t. Mostly, I’m frustrated that so many allistic people love this book, but it makes sense why they do — because it doesn’t actually make you think about the implications of the history at all! you can read it guilt-free!
History books can be very politically powerful, and I think the best history books include strong analysis and discussion of the topics at hand alongside their historical context. This book has little to none of that and it's bizarre and unfortunate. Silberman provides a lot of historical information but doesn't DO anything with it. Nearly every chapter and section felt like it deserved elaboration on how it related to wider trends in autism knowledge at its time, discussion of how language and terminology have changed since its time, questions about ethics, conversation about how autistic people today are still impacted by historical trends, etc etc etc. Compared to the things i know I and my autistic circles could say about the history presented in this book, the author’s lack of practically any analysis made the history feel flat, hollow, and disconnected.
Silberman entirely dismisses Hans Asperger’s connections to Naziism, despite the fact that his actions directly caused the deaths of thousands of disabled people in the T4 program. This exclusion felt incredibly misguided especially as the contemporary opinion of many autistic people (INCLUDING MANY OF THOSE WHO HE REFERENCES NEAR THE END OF THE BOOK!) is that using Asperger’s name has deservedly fallen out of fashion.
There’s a substantial amount of history regarding ABA, but there is no acknowledgement that many A/autistic people who have been through ABA found it traumatizing and abusive. Although Silberman writes about various practices that, imo, SHOULD be viewed as abusive, i.e. electroshock, food and water deprivation, spanking and hitting, etc; he takes no stance on the morality of any of these practices. The most he does is call ABA controversial. So much for listening to Autistic people, many of whom condemn ABA as the abusive practice that it is.
I keep noticing two diverging categories of autism acceptance / inclusion. People seem to either argue that autistic people deserve support/recognition/love/etc because every single person does, or they heavily imply that autistic people deserve these things because “autism makes us better as a society” or “leads to innovation” or “some autistic people are, in fact, really smart!” I feel like the latter argument is majorly flawed. You should want to accept and love autistic people regardless of our intellect or contributions to the world — I do not believe that a marginalized group’s liberation should be contingent on how “useful” said group can be. Unsurprisingly, this book often makes arguments that fall into this latter category, and I found it really exhausting.
I did learn a few things about the history of autism, sure. But overall, so much of this book felt flat and devoid of any nuanced analysis that I KNOW an Autistic researcher would’ve been able to bring to it.
I don’t think many a/Autistic people would get much out of reading this. I certainly didn’t. Mostly, I’m frustrated that so many allistic people love this book, but it makes sense why they do — because it doesn’t actually make you think about the implications of the history at all! you can read it guilt-free!
August 10, 2015
NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman provides a comprehensive (and very moving) history of autism from its original diagnostic criteria by Leo Kanner and Hans Asperger to parent-run organizations up to today's self-advocacy groups, in which people with autism are speaking for themselves and advocating for a focus on services not cures.
At first, I was overwhelmed by the amount of detail Silberman gives. It seemed as though what could be summed up in a couple of paragraph was explored for pages. As I got deeper into the book, however, I came to appreciate Silberman's approach which provides not only a generalized overview of the topic but depth as well. The stories of the labeling mothers as "refrigerator mothers," the narrowness and lack of scientific validity of the diagnostic process as well as the sometimes amazing efforts on the part of clinicians such as Asperger as well as family's to appreciate the child's (and as time went on, the adult's) strengths as well as difficulties became much more satisfying than a mere outline of the history would have been.
By the time Silberman's book approaches its end, the focus has shifted from autism as a childhood tragedy to a more comprehensive view of autism as a spectrum condition that is not only about children but adults as well. The neurodiversity movement calls for society to change, not only to "fix" the autistic person (although certainly to help address needs) but also to appreciate the person's strength's and perspectives and the skills that a different perspective can bring to the table of society.
Silberman's book moved me to anger and to tears and (occasionally) to laughter. The conclusion of the book, with its call for respect and accommodation to a variety of ways of processing the world, left me wanting to cheer.
I thank Steve Silberman for his beautiful work and (in the interest of full disclosure) LibraryThing for giving me this book as a part of its Early Reviewers' program. My opinions are my own.
I strongly recommend this book for anyone interested in autism, the disability rights' movement, or simply in the potential of all people to contribute to community and how everyone benefits from a policy of inclusion. In fact, I would recommend this book especially to people who have not given much thought to the subject. The implications of a shift in society's attitude would impact all of us positively.
It could change the world we live in for the better.
At first, I was overwhelmed by the amount of detail Silberman gives. It seemed as though what could be summed up in a couple of paragraph was explored for pages. As I got deeper into the book, however, I came to appreciate Silberman's approach which provides not only a generalized overview of the topic but depth as well. The stories of the labeling mothers as "refrigerator mothers," the narrowness and lack of scientific validity of the diagnostic process as well as the sometimes amazing efforts on the part of clinicians such as Asperger as well as family's to appreciate the child's (and as time went on, the adult's) strengths as well as difficulties became much more satisfying than a mere outline of the history would have been.
By the time Silberman's book approaches its end, the focus has shifted from autism as a childhood tragedy to a more comprehensive view of autism as a spectrum condition that is not only about children but adults as well. The neurodiversity movement calls for society to change, not only to "fix" the autistic person (although certainly to help address needs) but also to appreciate the person's strength's and perspectives and the skills that a different perspective can bring to the table of society.
Silberman's book moved me to anger and to tears and (occasionally) to laughter. The conclusion of the book, with its call for respect and accommodation to a variety of ways of processing the world, left me wanting to cheer.
I thank Steve Silberman for his beautiful work and (in the interest of full disclosure) LibraryThing for giving me this book as a part of its Early Reviewers' program. My opinions are my own.
I strongly recommend this book for anyone interested in autism, the disability rights' movement, or simply in the potential of all people to contribute to community and how everyone benefits from a policy of inclusion. In fact, I would recommend this book especially to people who have not given much thought to the subject. The implications of a shift in society's attitude would impact all of us positively.
It could change the world we live in for the better.
September 29, 2015
www.litwitwineanddine.com
Thanks to Penguin House/Avery via NetGalley for providing me with a free copy of this book in exchange for an honest review.
I admit that I was excited, really excited, when I heard about this book. After reading all 544 pages, I found myself more than a little let down. I was expecting to read about new research, treatment/therapy options, and ways for families to support one another and the autistic person they help care for. The book was largely about the history of autism and ASD morphing into the clinical diagnosis and diagnostic criteria we know today. The history was just dry. Lots of people (clinicians, parents, advocates, etc.) discussed, sometimes too many at one time. Though the Nazi experimentations and eugenics histories were appropriately horrifying, I'd read about them before. I was really hoping for new news.
Though there were some histories of persons and families that I could connect to, I didn't feel as though I had really learned anything after reading this book. Yes, many people in the past (and present, I'm sure) have been misdiagnosed and overlooked which (at least perhaps partially) accounts for more recent diagnostic spikes. Yes, people with ASD are making and have made amazing contributions in our society. Especially in the areas of technology and the arts. Yes, we should focus more time, money, and energy on identifying services helpful to individuals and families and making them accessible to all. Again, this is just not new news.
My rating: 2 stars
Thanks to Penguin House/Avery via NetGalley for providing me with a free copy of this book in exchange for an honest review.
I admit that I was excited, really excited, when I heard about this book. After reading all 544 pages, I found myself more than a little let down. I was expecting to read about new research, treatment/therapy options, and ways for families to support one another and the autistic person they help care for. The book was largely about the history of autism and ASD morphing into the clinical diagnosis and diagnostic criteria we know today. The history was just dry. Lots of people (clinicians, parents, advocates, etc.) discussed, sometimes too many at one time. Though the Nazi experimentations and eugenics histories were appropriately horrifying, I'd read about them before. I was really hoping for new news.
Though there were some histories of persons and families that I could connect to, I didn't feel as though I had really learned anything after reading this book. Yes, many people in the past (and present, I'm sure) have been misdiagnosed and overlooked which (at least perhaps partially) accounts for more recent diagnostic spikes. Yes, people with ASD are making and have made amazing contributions in our society. Especially in the areas of technology and the arts. Yes, we should focus more time, money, and energy on identifying services helpful to individuals and families and making them accessible to all. Again, this is just not new news.
My rating: 2 stars
August 7, 2016
This heartbreaking book came highly recommended. As an autistic adult with an autistic son I was sickened by the book, the therapies, the history. I thought of my own childhood and how grateful I am that I was born verbal and in an intact family that raised me, accepting me where I was and allowing me to do the best that I can.
As a member of the autism community reading this book is like getting punched in the face over and over again, until you get to the last chapter about neurodiversity, where there is some hope. Again, I'm not sorry I read this book but it made me physically sick.
We've followed the voices of adults on the autism spectrum to guide the way we raised our son and used principles of Cognitive Therapy to help him gain the skills to cope with day to day challenges of the way he processes information. I encourage anyone that read this book to read the internet writings of Karla Fisher or the books on understanding autism by Bill Nason. If you are simply curious about autism, the chapter on autism in the book "Far from the tree" is the best summarization of autism that I ever read. It's an excellent book and that is an excellent stand alone chapter.
As a member of the autism community reading this book is like getting punched in the face over and over again, until you get to the last chapter about neurodiversity, where there is some hope. Again, I'm not sorry I read this book but it made me physically sick.
We've followed the voices of adults on the autism spectrum to guide the way we raised our son and used principles of Cognitive Therapy to help him gain the skills to cope with day to day challenges of the way he processes information. I encourage anyone that read this book to read the internet writings of Karla Fisher or the books on understanding autism by Bill Nason. If you are simply curious about autism, the chapter on autism in the book "Far from the tree" is the best summarization of autism that I ever read. It's an excellent book and that is an excellent stand alone chapter.
October 17, 2015
As someone interested in autism, its theories and its future, after reading some reviews of this book, I was hoping this would be a good, comprehensive introduction to the details of the subject. Instead, it was a long-winded, yet surface level history that could have been much deeper had the author not tried to shoehorn traditional narratives into a nontraditional story.
The books started out great, talking about various historical figures that would likely have been diagnosed with autism today. In these wonderfully-written chapters, the author makes no grand conclusions, but provides the facts in a compelling narrative that points in a direction ... aka good writing.
After that, the book gets clumsier and more questionable. The discussions of Hans Asperger are nice, but border on annointing Asperger as a saint that completely predicted all forms of autism. A positive depiction of Asperger is certainly justified, but this section was saccharine in its sweetness towards the subject.
The worst offense, however, was the long-winded and clumsy attempt at creating an antagonist out of Leo Kanner. The book portrays Kanner as a swindler, a Doctor that had no business being a serious player in child psychology, and someone who knowingly, maybe even maliciously, ignored Hans Asperger's writings on the "normal" side of the autistic spectrum to promote his own career. Of course, the reader comes with the benefit of hindsight, which makes the demonization very unfair.
The book also starts diagnosing people as on the autistic spectrum with little or no knowledge of their actual behaviors, treating autism seemingly as a personality trait indistinguishable from nerdiness. When talking about the birth of comic books and amateur radio operators, the book spontaneously diagnoses the entire readership of a trade magazine as autistic, dubbing them "Asperger's Army."
After that, it was hard to take any assertions the book made seriously, and it left me wishing I had just read some medical literature.
The books started out great, talking about various historical figures that would likely have been diagnosed with autism today. In these wonderfully-written chapters, the author makes no grand conclusions, but provides the facts in a compelling narrative that points in a direction ... aka good writing.
After that, the book gets clumsier and more questionable. The discussions of Hans Asperger are nice, but border on annointing Asperger as a saint that completely predicted all forms of autism. A positive depiction of Asperger is certainly justified, but this section was saccharine in its sweetness towards the subject.
The worst offense, however, was the long-winded and clumsy attempt at creating an antagonist out of Leo Kanner. The book portrays Kanner as a swindler, a Doctor that had no business being a serious player in child psychology, and someone who knowingly, maybe even maliciously, ignored Hans Asperger's writings on the "normal" side of the autistic spectrum to promote his own career. Of course, the reader comes with the benefit of hindsight, which makes the demonization very unfair.
The book also starts diagnosing people as on the autistic spectrum with little or no knowledge of their actual behaviors, treating autism seemingly as a personality trait indistinguishable from nerdiness. When talking about the birth of comic books and amateur radio operators, the book spontaneously diagnoses the entire readership of a trade magazine as autistic, dubbing them "Asperger's Army."
After that, it was hard to take any assertions the book made seriously, and it left me wishing I had just read some medical literature.
September 8, 2017
'NeuroTribes' is a well-written, deeply-researched book of history which describes the centuries of effort that has gone into developing a psychological outline of autism (still incomplete). The author, Steve Silberman, includes short biographies of likely autistic-spectrum scientists as well. In telling the story of discovery about autism and about people with autism, he also shows us readers how psychological research is generally done and that it is in its infancy. He gives valid arguments and examples for psychological research and treatment today to be made an inclusive ongoing collaboration of professionals and laymen. The middle sections of the book, which are a devastating history of the craziness to find a cure for autism (none available to date) more than amply satisfy me as to the validity of Silberman's argument for a research collaboration between professionals and non-professionals.
I feel completely justified in saying people should use common sense AND try to figure out if a diagnosis matches actual facts AND read all of the studies which have been done with ALL of the established mainstream scientific method protocols and observations. If there is nothing but vague testimonials of success or only a single scientific study without any mainstream follow-ups that have replicated the initial results several times again over a period of years, walk away and keep looking.
Sadly, many people incorrectly believe inoculations against childhood diseases cause autism despite many many many mainstream scientific studies debunking the single study which supposedly proved inoculations were causing autism. But people want to believe they can avoid autism in their kids if they avoid inoculations.
Another sad example of the desperation and the urgent desire to find a cure, plus just plain rage against the universe, was the earlier diagnosis by a single professional of the idea 'refrigerator moms' caused autism, thus implying a cure was affection and love.
Well, to me, this wild grasping at something or someone to blame shows the pain and despair of parents and investigators. It also shows the inability of everyone to face up to two obvious conclusions about autism today: 1. we can't currently cure it. 2. it is horrible. However, centuries of experimentation is showing that a variety of limited teaching techniques, time, experience, money, perseverance, patience and dutiful lifelong encouragement can improve the lives of people who are along the autism spectrum.
On the other hand, the history of autism research also shows professional investigators studying psychological issues can cause devastation and destruction if they are careless or are forcing facts to match their feelings or if the investigator is a crackpot or charlatan. A college degree does not mean a person knows how to do research or that they are moral - it means simply they know enough to pass exams.
The story of autism is a mixed bag of outcomes.The bad news is there is no cure. The good news is individuals with neurodiverse brain structures can be educated with uninterrupted maintenance of a low-emotional temperature in the room, genuine caring, teaching to the strengths of the individual, and listening to people in the autistic spectrum who have succeeded in becoming independent and successful in their chosen careers. A lot of patience, perseverance, money and access to a variety of other resources work.
The issues not mentioned in the book are about the labor-intensive devotion one must endure and maintain for all of one's life if you choose to be always available for helping. It is a bit like being a mom of a toddler in some ways for the rest of your life, although the person you are helping may be an adult with many adult understandings. The author tells briefly without going into detail of families who do this supportive labor with a smile and love, strained though I am guessing it is. I know I do not possess this fortitude or strength myself.
I recommend the book especially to anyone living with or around someone who we now are calling the neurodiverse universe, and also even if, gentle reader, you are simply curious particularly about autism or know someone with a differently wired brain issue. I am close to someone who is in the neurodiverse universe, and frankly, if given other options, I'd avoid being real closely involved with someone who is neurodiverse. Friendship and occasionally being there to help is awesome noble, but otherwise...omg, the lack of respite or rest! The lack of a cure! The complete abnormality of daily life! This is something which requires a lot of resources and time and commitment and sacrifice. No kidding.
From my own experience, we all mix up the issues surrounding autism. After reading this book, I'd separate out:
Causes, which at this point look to be a combination of inherited genes and environment, especially pollution, and even sometimes accidental injuries to the brain.
Cures, which at this point, there are none.
Modifying and improving the abilities and talents of the neurodiverse, mostly through special education techniques and acceptance; and palliative care at minimum if nothing else.
Providing resources to the family supporting the neurodiverse.
In the real world, gentle reader, we are failing to have any consistency whatsoever, in dealing with the neurodiverse. It is strictly hit and miss, off and on, a program here for awhile, a resource there for a time. So far, the book shows it is from parent organizations only where any consistency or progress is being made at organizing information and developing successful educational programs for autistic kids.
The book makes it clear that inventive people who are somewhere in the high-functioning end of the autistic spectrum or have Asperger's or have whatever neurodiverse mental wiring which seems similar to autism symptoms (insert psychological label here - people are still arguing) are very likely the reason we live in the technological first-world paradise (mostly available to rich people and us less rich, at least those parts of technology which dribble down to us). This is definitely the half of the glass which is positive! However, it seems to me this is a childhood disability which requires intensive parenting and educational resources to even begin alleviating - and to be brutally honest, as a society we don't have those resources. The folks who are neurodiverse and who have been lucky to get access to both resources AND strong-minded, healthy parents (because, by the way, discoveries about autism and education/social integration methodologies have been driven by involved PARENTS, not the so-called psychiatric experts) are the ones who are written about in books such as this. In the real world, neuronormal people can barely keep their own lives moving forward because of minimal resources.
: (
There is a HUGE notes section for further reading, as well as an index.
I feel completely justified in saying people should use common sense AND try to figure out if a diagnosis matches actual facts AND read all of the studies which have been done with ALL of the established mainstream scientific method protocols and observations. If there is nothing but vague testimonials of success or only a single scientific study without any mainstream follow-ups that have replicated the initial results several times again over a period of years, walk away and keep looking.
Sadly, many people incorrectly believe inoculations against childhood diseases cause autism despite many many many mainstream scientific studies debunking the single study which supposedly proved inoculations were causing autism. But people want to believe they can avoid autism in their kids if they avoid inoculations.
Another sad example of the desperation and the urgent desire to find a cure, plus just plain rage against the universe, was the earlier diagnosis by a single professional of the idea 'refrigerator moms' caused autism, thus implying a cure was affection and love.
Well, to me, this wild grasping at something or someone to blame shows the pain and despair of parents and investigators. It also shows the inability of everyone to face up to two obvious conclusions about autism today: 1. we can't currently cure it. 2. it is horrible. However, centuries of experimentation is showing that a variety of limited teaching techniques, time, experience, money, perseverance, patience and dutiful lifelong encouragement can improve the lives of people who are along the autism spectrum.
On the other hand, the history of autism research also shows professional investigators studying psychological issues can cause devastation and destruction if they are careless or are forcing facts to match their feelings or if the investigator is a crackpot or charlatan. A college degree does not mean a person knows how to do research or that they are moral - it means simply they know enough to pass exams.
The story of autism is a mixed bag of outcomes.The bad news is there is no cure. The good news is individuals with neurodiverse brain structures can be educated with uninterrupted maintenance of a low-emotional temperature in the room, genuine caring, teaching to the strengths of the individual, and listening to people in the autistic spectrum who have succeeded in becoming independent and successful in their chosen careers. A lot of patience, perseverance, money and access to a variety of other resources work.
The issues not mentioned in the book are about the labor-intensive devotion one must endure and maintain for all of one's life if you choose to be always available for helping. It is a bit like being a mom of a toddler in some ways for the rest of your life, although the person you are helping may be an adult with many adult understandings. The author tells briefly without going into detail of families who do this supportive labor with a smile and love, strained though I am guessing it is. I know I do not possess this fortitude or strength myself.
I recommend the book especially to anyone living with or around someone who we now are calling the neurodiverse universe, and also even if, gentle reader, you are simply curious particularly about autism or know someone with a differently wired brain issue. I am close to someone who is in the neurodiverse universe, and frankly, if given other options, I'd avoid being real closely involved with someone who is neurodiverse. Friendship and occasionally being there to help is awesome noble, but otherwise...omg, the lack of respite or rest! The lack of a cure! The complete abnormality of daily life! This is something which requires a lot of resources and time and commitment and sacrifice. No kidding.
From my own experience, we all mix up the issues surrounding autism. After reading this book, I'd separate out:
Causes, which at this point look to be a combination of inherited genes and environment, especially pollution, and even sometimes accidental injuries to the brain.
Cures, which at this point, there are none.
Modifying and improving the abilities and talents of the neurodiverse, mostly through special education techniques and acceptance; and palliative care at minimum if nothing else.
Providing resources to the family supporting the neurodiverse.
In the real world, gentle reader, we are failing to have any consistency whatsoever, in dealing with the neurodiverse. It is strictly hit and miss, off and on, a program here for awhile, a resource there for a time. So far, the book shows it is from parent organizations only where any consistency or progress is being made at organizing information and developing successful educational programs for autistic kids.
The book makes it clear that inventive people who are somewhere in the high-functioning end of the autistic spectrum or have Asperger's or have whatever neurodiverse mental wiring which seems similar to autism symptoms (insert psychological label here - people are still arguing) are very likely the reason we live in the technological first-world paradise (mostly available to rich people and us less rich, at least those parts of technology which dribble down to us). This is definitely the half of the glass which is positive! However, it seems to me this is a childhood disability which requires intensive parenting and educational resources to even begin alleviating - and to be brutally honest, as a society we don't have those resources. The folks who are neurodiverse and who have been lucky to get access to both resources AND strong-minded, healthy parents (because, by the way, discoveries about autism and education/social integration methodologies have been driven by involved PARENTS, not the so-called psychiatric experts) are the ones who are written about in books such as this. In the real world, neuronormal people can barely keep their own lives moving forward because of minimal resources.
: (
There is a HUGE notes section for further reading, as well as an index.
November 18, 2016
Nice history about autism and Aspergers. Wished it had more general information and not just data about a few cases. A bit dragged on, but informative.
Glad I listened to the audiobook.
4 out of 5 stars.
Glad I listened to the audiobook.
4 out of 5 stars.
October 20, 2022
TW: misinformation, mention of WW 2 details
It took everything in me to finish this book.
Perhaps I had too high an expectation, though I had never heard of it and going purely from the cover and summary decided to read it, this has been hands down the WORST book I've read thus far this year. And there are some books I've read that I haven't reviewed, because they're comfort books and never truly stop being read by me. Yet this book I spit out of my mouth and walk over.
Firstly, the introduction is supposed to tell us about why and how it came about that a person would have written a book titled: NeuroTribes. It is an easy assumption that we will be looking at the variances and nuances of being neurodiverse, likely especially considering the word useage of "tribes" those closely related, but not the same as, autism. But no. We are instead given a very brief history of the author and then the great Hans Asperger (written only once, heretofore referred to by HA) is introduced as the father and amazing detective of the autistic brain. What a GREAT guy!
Chapter one starts us off differently, and I settle myself in to have my mind changed. Discussions of pseudoscience and pseudomedication for the purposes of "curing" autism and how they take advantage of families is discussed, several families come to touching realizations.
Then we are jerked back to an obscure figure in history, being convinced he is autistic and important. (Spoiler: we'll never know, he didn't study neurology, how is this relative? Second spoiler: it's not.) Then we come back to HA. I wait for the truth to be told. It is not. I wait longer. And longer. And longer. Around the time we reach the year 1941 in his gushing history of HA, I realize that he has not mentioned the Nazis or Hitler once. Your average layperson may not be able to put their finger on the exact dates of the second World War and the cruelties of the Nazis, but especially due to my heritage which influences my reading, I am. Indeed we should have been hearing about Hitler the entire time. HA was a known supporter of the Nazi regime, believed in a cure for autism, and decided which children were worth the studying and torture and which were sent straight to concentration camps. Don't worry though, the children who survived HA got to the camps when he had no more use for them. Instead, I began to count after the first time the awful Nazi regime was finally mentioned. I didn't have to take my shoes off. And then, there is the mention of the TRUE mother of autism: Grunya Sukhareva! Aha! So he DOES acknowledge that she wrote extensively on autism two decades prior and that HA had likely read her work! So now it will all be fixed.
No. It wasn't. She is barely acknowledged as having studied it two decades prior to HA, and then we are rushed on to remember how amazing HA is, and how he just "came up" these perfect terms and ways of testing both male and female subjects- though female were harder due to stereotypical patriarchal training of young women and girls. Right... Even though he read her work, which is exactly what we JUST finally got to in today's time, he discovered and named everything. Instead, he wrote off girls and women having it and studied and believed only boys had it and it was a childhood affliction.
The second half of the book is completely different. Most of the "historical" part of the book has absolutely nothing to do with autism nor its discovery. And he somehow manages to speak about the entire decade of power that Hitler had, without saying his name more than a handful of times. Yet everything around Hitler was spoken about. HA's children's clinic, (read: eugenics research and child torture), was a beacon of light saving lives. It was not only disbelieving but beyond frustrating as I know not everyone reading the book has my knowledge of the actual history. I was let down so hardly by this catastrophe of a book. Every chapter was written differently, there was no coherence to this so called long term study summary on autism and related neurodivergencies. If you could cut up and toss out parts of a book, this piece would salvageable. But you can't. And it speaks to a deeper level of ignorance that the book is apparently so acclaimed (as I found out after reading). The entirety of the subtitle is tried to be crammed into the final chapter and the end at that.
I'm ranting at this point, but
TDLR: Unfaithful to historical fact, purposeful misinformation regarding the Nazi regime and HA's involvement, and directly speaking ONLY of autism. That is not a multiple sir, that is singular.
2/10 recommend only if you want to know what history ISN'T true, with a good bit here and there. Otherwise, a waste of time and brain space.
It took everything in me to finish this book.
Perhaps I had too high an expectation, though I had never heard of it and going purely from the cover and summary decided to read it, this has been hands down the WORST book I've read thus far this year. And there are some books I've read that I haven't reviewed, because they're comfort books and never truly stop being read by me. Yet this book I spit out of my mouth and walk over.
Firstly, the introduction is supposed to tell us about why and how it came about that a person would have written a book titled: NeuroTribes. It is an easy assumption that we will be looking at the variances and nuances of being neurodiverse, likely especially considering the word useage of "tribes" those closely related, but not the same as, autism. But no. We are instead given a very brief history of the author and then the great Hans Asperger (written only once, heretofore referred to by HA) is introduced as the father and amazing detective of the autistic brain. What a GREAT guy!
Chapter one starts us off differently, and I settle myself in to have my mind changed. Discussions of pseudoscience and pseudomedication for the purposes of "curing" autism and how they take advantage of families is discussed, several families come to touching realizations.
Then we are jerked back to an obscure figure in history, being convinced he is autistic and important. (Spoiler: we'll never know, he didn't study neurology, how is this relative? Second spoiler: it's not.) Then we come back to HA. I wait for the truth to be told. It is not. I wait longer. And longer. And longer. Around the time we reach the year 1941 in his gushing history of HA, I realize that he has not mentioned the Nazis or Hitler once. Your average layperson may not be able to put their finger on the exact dates of the second World War and the cruelties of the Nazis, but especially due to my heritage which influences my reading, I am. Indeed we should have been hearing about Hitler the entire time. HA was a known supporter of the Nazi regime, believed in a cure for autism, and decided which children were worth the studying and torture and which were sent straight to concentration camps. Don't worry though, the children who survived HA got to the camps when he had no more use for them. Instead, I began to count after the first time the awful Nazi regime was finally mentioned. I didn't have to take my shoes off. And then, there is the mention of the TRUE mother of autism: Grunya Sukhareva! Aha! So he DOES acknowledge that she wrote extensively on autism two decades prior and that HA had likely read her work! So now it will all be fixed.
No. It wasn't. She is barely acknowledged as having studied it two decades prior to HA, and then we are rushed on to remember how amazing HA is, and how he just "came up" these perfect terms and ways of testing both male and female subjects- though female were harder due to stereotypical patriarchal training of young women and girls. Right... Even though he read her work, which is exactly what we JUST finally got to in today's time, he discovered and named everything. Instead, he wrote off girls and women having it and studied and believed only boys had it and it was a childhood affliction.
The second half of the book is completely different. Most of the "historical" part of the book has absolutely nothing to do with autism nor its discovery. And he somehow manages to speak about the entire decade of power that Hitler had, without saying his name more than a handful of times. Yet everything around Hitler was spoken about. HA's children's clinic, (read: eugenics research and child torture), was a beacon of light saving lives. It was not only disbelieving but beyond frustrating as I know not everyone reading the book has my knowledge of the actual history. I was let down so hardly by this catastrophe of a book. Every chapter was written differently, there was no coherence to this so called long term study summary on autism and related neurodivergencies. If you could cut up and toss out parts of a book, this piece would salvageable. But you can't. And it speaks to a deeper level of ignorance that the book is apparently so acclaimed (as I found out after reading). The entirety of the subtitle is tried to be crammed into the final chapter and the end at that.
I'm ranting at this point, but
TDLR: Unfaithful to historical fact, purposeful misinformation regarding the Nazi regime and HA's involvement, and directly speaking ONLY of autism. That is not a multiple sir, that is singular.
2/10 recommend only if you want to know what history ISN'T true, with a good bit here and there. Otherwise, a waste of time and brain space.
November 13, 2023
wrote about 3/4 of this review and then hit the chapter where Silberman mentions that the guy who developed aversion therapy (cattle prods) for flappy hands/headbanging/etc also helped develop gay conversion therapy and it was truly like the Scooby-Doo mask came off the whole world at once. truly an “oh—oh, DUH” for the ages
as an offshoot of this, I'm a little obsessed with the story here about the precarious nature of the “healthy” body or the “healthy” mind as the able & typical communities of this world define it; one of the first things I heard when I started learning about disability studies (I think this is not uncommon) was the idea that rather than thinking of some people as able, we might think of them as temporarily able, since disability is more or less a guarantee for every person fortunate to live long enough to develop one. and yet despite this, disability is placed on the other side of a red line from the presumed citizen who lives in built spaces and communicating societies, treated as a shuddering horror which reflects on the moral character of the person experiencing it... autism is not a disability that people develop as they grow older, lol, but what I mean by making the connection is: I’m reminded of a wonderful essay about Fleishman is in Trouble discussing the emotional tribulations of wealthy white parents in this country—their astonishing levels of stress, the precarity of privilege, and the unspoken absolute certainty among these people that a life outside the charmed circle of wealth might as well be death—they are so entirely conscious that they treat people outside their social group as inhuman, and that if they slip, they’ll become inhuman, too.
this is ostensibly a book about the history of the autistic community, but what emerges is a comprehensive and damning portrait of the neurotypical one, with a little bit of issue creep into the history of violently enforced social conformity (not that these are separable, ofc!). (there's a weird line for Silberman to walk here between identifying/celebrating human difference and positively hyperpathologizing it?) disability studies is often so tremendously exciting because digging into it lights up SO much invisible stitchwork of other types of oppression and liberation—questions of labor! questions of autonomy and dependence! questions of family! the anxieties of the body, the anxieties of the body public!
Silberman has, I think, a fascination with autistic adults who have few support needs—which is a pretty typical preoccupation among people writing about autism these days, as far as I understand things—and though he does paint a wide-ranging picture of variance in the autistic experience, this sort of “Gifted People” figure (including a very 2015ish fetishization of the Silicon Valley genius boy, which is eyeroll-worthy in all the usual ways) does still come through to some extent; not helped by the fact that his subjects of study are overwhelmingly wealthy and overwhelmingly white. (also, weirdly and overwhelmingly Jewish? I'll get more into this later but I feel like 75% of the autistic people quoted in this book and probably 90% of the doctors are Jewish. genuinely made me wonder whether autism diagnosis rates are higher for Jews, and if they aren't, ???) anyway: for a book with such a delight in identifying and describing undiagnosed autistic behavior in people who lived prior to diagnoses—I recognize the scholarly problems with this habit, but I do have a lot of time for it, if only because descriptions of these people are so breathlessly joyful in a way that's really refreshing—you'd think it would be a little more interested in seeking out undiagnosed autistic behavior outside of absent-minded 18th-century European geniuses and ham radio operators?
this focus does go to an end, which is demonstration after demonstration of the institutionalization and abuse of joyful, interesting kids who have committed such crimes as “wanting to be a spaceship captain”; difficult to read some of these chapters without crying with anger, difficult to think about anti-vaxxers saying “vaccines will give my kid autism!” without wanting to respond “you should be so fucking lucky”—but this last is sort of what I mean about there being a slightly corny “it's a superpower!!” attitude here, lol, though I think Silberman is aware of that and tries to mitigate it with mixed results. I don't know that it's precisely inspiration porn—certainly no one is Bravely Overcoming autism and Silberman clearly would not want them to, and though there is a certain amount of focus on “look at all the Contributions these Savants have made to Humanity!” (again, apparently exclusively in the form of becoming computer programmers; first of all, whether that's a contribution to humanity is dubious, and second of all, hyperlexia who, I guess?) the thesis of it all seems to be less “now, you may only see autistic people's terrible personality flaws, but it is important to note that they are also useful to real people”, and more “autistic people are fun and cool”. an uncommon and welcome take! and yet: one that, again, seems to create a narrative where autistic people with few or no support needs have a perspective that's urgently needed, but when it comes to autistic people with more support needs, parents remain the protagonists of the story; all opinions about autistic people's lives worth hearing are parents' opinions. mmm. of course there's naturally more difficulty for the writer in trying to get the opinions of autistic people who communicate far less than others, or communicate in ways that are very different from others; but then again the value of putting in the effort to do that communication is pretty explicitly the thesis of the book.
a couple of intersections that jumped out at me: firstly, how autistic children have been so consistently used, against their will, as a stick to beat women with—the early diagnoses of autism as caused by mothers having college degrees or being too interested in having an intellectual life outside the home! more recently, particularly in the chapter where Silberman discusses the “cures” for autism that have emerged among America’s snake oil salesmen, in which not only vaccines but food come under the neurotypical microscope, it’s impossible not to draw a connection between the legal, socially acceptable child abuse shown here and the disordered eating perpetuated by fad diets, liposuction, Ozempic, and more. the conspiratorial thinking and fear that infects the “healthy” people of the U.S. around what is eaten and what is fed to children, these recurrences of an obsession with ingesting poison or disease, with needing to purge the body and the family of uncleanness and indulgence—there's probably a whole book to be written (if it hasn't been already!) on the figure of The Mother in anti-vax circles, the expectations placed on her, the social consequences if she is a “failure” (has children on the spectrum), this surprisingly intertwined history of autism and pathologized gender nonconformity! this extremely physiological figuring of the neurodiverse kid as a product of an infected or poisoned body...
anyway, not unrelatedly, the second is that the history of autism and its diagnosis is a surprisingly Jewish one—not only the quantity of Jewish doctors and parents involved in the institutional history from the '50s onward, but that its earliest identification and description as a condition took place during the rise of eugenics. not coincidentally. the fascinating book Stepchildren of the Shtetl: The Destitute, Disabled, and Mad of Jewish Eastern Europe discusses the meme, perpetuated by both Victorian anti-Semites and Victorian Zionists to different purposes, of the “neurotic” diaspora Jew. this is the Jew afflicted with anxiety and hyperchondria and despair, the weedy and crooked and unathletic Jew, the obsessively intellectual and self-analytical and sexually dysfunctional Jew, the Jew who is essentially unattractive, essentially untrustworthy, and essentially unfit for polite society. this was of course purposefully used in propaganda by the Nazi Party later, but this figure existed well before they did—again, it was a regular argument among some political groups that moving to Israel would "cure" the Jewish community of these people—and the history of American eugenics and Hans Asperger is one with it; when this book explores the history of the autism diagnosis and its roots in pre-Nazi Austria, it shows the mass murder of Jews and the mass murder of people with disabilities as not coincidentally linked by our shared murderers (as was seen in post-Holocaust analysis, as people in the US worked to develop a worldview which could reject Nazi beliefs en masse and prevent their developing in future, and yet still accept lobotomies, compulsory sterilization, and other routine abuses of patients), but deeply intertwined through notions of abnormality and through the nightmarish possibility, embodied in the urban educated Jewish doctors that studied gender variance and neurodiversity, that the plague of abnormality would come into YOUR house—would steal YOUR child—and replace them with a thing you can't control, wearing your child’s face…
like I said! many thoughts! mostly about neurotypical neuroses! I kept thinking of A Wrinkle in Time, which in retrospect so clearly has a relationship with neurodiversity (tired: this kid has ADHD and dyslexia because he is the son of Poseidon genetically wired to fight monsters. wired: three angels need kids to defeat a giant evil brain and the only people capable of handling this are two kids with autism and Calvin. inspired: my favorite of the three angels speaks almost exclusively in echolalia?) and its specific fears about the underlying logic in a world that looks like Camazotz.
profoundly struck by what that doctor who invented aversion therapy and conversion therapy said about both autism and what institutions then referred to as “sissy-boy syndrome”: listen, we don't think there's anything actually morally wrong with what this kid is doing. but we know damn well the world will punish him for it. and between changing one kid and changing the world—well, which one is easier?
as an offshoot of this, I'm a little obsessed with the story here about the precarious nature of the “healthy” body or the “healthy” mind as the able & typical communities of this world define it; one of the first things I heard when I started learning about disability studies (I think this is not uncommon) was the idea that rather than thinking of some people as able, we might think of them as temporarily able, since disability is more or less a guarantee for every person fortunate to live long enough to develop one. and yet despite this, disability is placed on the other side of a red line from the presumed citizen who lives in built spaces and communicating societies, treated as a shuddering horror which reflects on the moral character of the person experiencing it... autism is not a disability that people develop as they grow older, lol, but what I mean by making the connection is: I’m reminded of a wonderful essay about Fleishman is in Trouble discussing the emotional tribulations of wealthy white parents in this country—their astonishing levels of stress, the precarity of privilege, and the unspoken absolute certainty among these people that a life outside the charmed circle of wealth might as well be death—they are so entirely conscious that they treat people outside their social group as inhuman, and that if they slip, they’ll become inhuman, too.
this is ostensibly a book about the history of the autistic community, but what emerges is a comprehensive and damning portrait of the neurotypical one, with a little bit of issue creep into the history of violently enforced social conformity (not that these are separable, ofc!). (there's a weird line for Silberman to walk here between identifying/celebrating human difference and positively hyperpathologizing it?) disability studies is often so tremendously exciting because digging into it lights up SO much invisible stitchwork of other types of oppression and liberation—questions of labor! questions of autonomy and dependence! questions of family! the anxieties of the body, the anxieties of the body public!
Silberman has, I think, a fascination with autistic adults who have few support needs—which is a pretty typical preoccupation among people writing about autism these days, as far as I understand things—and though he does paint a wide-ranging picture of variance in the autistic experience, this sort of “Gifted People” figure (including a very 2015ish fetishization of the Silicon Valley genius boy, which is eyeroll-worthy in all the usual ways) does still come through to some extent; not helped by the fact that his subjects of study are overwhelmingly wealthy and overwhelmingly white. (also, weirdly and overwhelmingly Jewish? I'll get more into this later but I feel like 75% of the autistic people quoted in this book and probably 90% of the doctors are Jewish. genuinely made me wonder whether autism diagnosis rates are higher for Jews, and if they aren't, ???) anyway: for a book with such a delight in identifying and describing undiagnosed autistic behavior in people who lived prior to diagnoses—I recognize the scholarly problems with this habit, but I do have a lot of time for it, if only because descriptions of these people are so breathlessly joyful in a way that's really refreshing—you'd think it would be a little more interested in seeking out undiagnosed autistic behavior outside of absent-minded 18th-century European geniuses and ham radio operators?
this focus does go to an end, which is demonstration after demonstration of the institutionalization and abuse of joyful, interesting kids who have committed such crimes as “wanting to be a spaceship captain”; difficult to read some of these chapters without crying with anger, difficult to think about anti-vaxxers saying “vaccines will give my kid autism!” without wanting to respond “you should be so fucking lucky”—but this last is sort of what I mean about there being a slightly corny “it's a superpower!!” attitude here, lol, though I think Silberman is aware of that and tries to mitigate it with mixed results. I don't know that it's precisely inspiration porn—certainly no one is Bravely Overcoming autism and Silberman clearly would not want them to, and though there is a certain amount of focus on “look at all the Contributions these Savants have made to Humanity!” (again, apparently exclusively in the form of becoming computer programmers; first of all, whether that's a contribution to humanity is dubious, and second of all, hyperlexia who, I guess?) the thesis of it all seems to be less “now, you may only see autistic people's terrible personality flaws, but it is important to note that they are also useful to real people”, and more “autistic people are fun and cool”. an uncommon and welcome take! and yet: one that, again, seems to create a narrative where autistic people with few or no support needs have a perspective that's urgently needed, but when it comes to autistic people with more support needs, parents remain the protagonists of the story; all opinions about autistic people's lives worth hearing are parents' opinions. mmm. of course there's naturally more difficulty for the writer in trying to get the opinions of autistic people who communicate far less than others, or communicate in ways that are very different from others; but then again the value of putting in the effort to do that communication is pretty explicitly the thesis of the book.
a couple of intersections that jumped out at me: firstly, how autistic children have been so consistently used, against their will, as a stick to beat women with—the early diagnoses of autism as caused by mothers having college degrees or being too interested in having an intellectual life outside the home! more recently, particularly in the chapter where Silberman discusses the “cures” for autism that have emerged among America’s snake oil salesmen, in which not only vaccines but food come under the neurotypical microscope, it’s impossible not to draw a connection between the legal, socially acceptable child abuse shown here and the disordered eating perpetuated by fad diets, liposuction, Ozempic, and more. the conspiratorial thinking and fear that infects the “healthy” people of the U.S. around what is eaten and what is fed to children, these recurrences of an obsession with ingesting poison or disease, with needing to purge the body and the family of uncleanness and indulgence—there's probably a whole book to be written (if it hasn't been already!) on the figure of The Mother in anti-vax circles, the expectations placed on her, the social consequences if she is a “failure” (has children on the spectrum), this surprisingly intertwined history of autism and pathologized gender nonconformity! this extremely physiological figuring of the neurodiverse kid as a product of an infected or poisoned body...
anyway, not unrelatedly, the second is that the history of autism and its diagnosis is a surprisingly Jewish one—not only the quantity of Jewish doctors and parents involved in the institutional history from the '50s onward, but that its earliest identification and description as a condition took place during the rise of eugenics. not coincidentally. the fascinating book Stepchildren of the Shtetl: The Destitute, Disabled, and Mad of Jewish Eastern Europe discusses the meme, perpetuated by both Victorian anti-Semites and Victorian Zionists to different purposes, of the “neurotic” diaspora Jew. this is the Jew afflicted with anxiety and hyperchondria and despair, the weedy and crooked and unathletic Jew, the obsessively intellectual and self-analytical and sexually dysfunctional Jew, the Jew who is essentially unattractive, essentially untrustworthy, and essentially unfit for polite society. this was of course purposefully used in propaganda by the Nazi Party later, but this figure existed well before they did—again, it was a regular argument among some political groups that moving to Israel would "cure" the Jewish community of these people—and the history of American eugenics and Hans Asperger is one with it; when this book explores the history of the autism diagnosis and its roots in pre-Nazi Austria, it shows the mass murder of Jews and the mass murder of people with disabilities as not coincidentally linked by our shared murderers (as was seen in post-Holocaust analysis, as people in the US worked to develop a worldview which could reject Nazi beliefs en masse and prevent their developing in future, and yet still accept lobotomies, compulsory sterilization, and other routine abuses of patients), but deeply intertwined through notions of abnormality and through the nightmarish possibility, embodied in the urban educated Jewish doctors that studied gender variance and neurodiversity, that the plague of abnormality would come into YOUR house—would steal YOUR child—and replace them with a thing you can't control, wearing your child’s face…
like I said! many thoughts! mostly about neurotypical neuroses! I kept thinking of A Wrinkle in Time, which in retrospect so clearly has a relationship with neurodiversity (tired: this kid has ADHD and dyslexia because he is the son of Poseidon genetically wired to fight monsters. wired: three angels need kids to defeat a giant evil brain and the only people capable of handling this are two kids with autism and Calvin. inspired: my favorite of the three angels speaks almost exclusively in echolalia?) and its specific fears about the underlying logic in a world that looks like Camazotz.
profoundly struck by what that doctor who invented aversion therapy and conversion therapy said about both autism and what institutions then referred to as “sissy-boy syndrome”: listen, we don't think there's anything actually morally wrong with what this kid is doing. but we know damn well the world will punish him for it. and between changing one kid and changing the world—well, which one is easier?
August 25, 2015
If you have any interest in autism or the history of psychiatry, this book is for you. I've taught toddlers and preschoolers for over 20 years and have had students with autism in my classes; some were diagnosed while in my class while others were diagnosed later. I remember my team and I fighting to get one particular boy diagnosed and provided with services who was clearly Asperger's while another was later diagnosed and we went, "Oh, that explains a lot." The information has changed a lot over the years and it's hard to keep up with the current thinking.
This book provides a detailed, thorough look at the history of autism, its permutations as well as the permutations of the definition of autism. Put me firmly in the camp, where the author also seems to be, that there isn't an epidemic of autism. What's changed is the definition and diagnosis for autism, from a strict, highly limited and rigid definition to a broader, more accommodating definition. As well, there's the fascinating, and to me highly likely, hypothesis that autism, especially certain forms of it, are just part of the normal continuum and one that veers to genius level at times. Maybe instead of 'fixing' autistics, and oh, there are some heartbreaking stories, we need to be focused on how to adjust the world to include them. Many inventors and some geniuses were autistic and Silberman, along with doctors and experts before him, posit that without those autistic gifts, the inventors and geniuses wouldn't have been capable of their achievements.
"NeuroTribes" is full of fascinating information, history, and theories. I read it on my Kindle and highlighted so much of the book, I may not be able to find what I'm looking for. At times, the history dragged on, there could have been less detail, but overall I was impressed with Silberman's thoroughness and I learned so much. I'll definitely recommend this to my co-workers and the administration where I teach. The author did get judgmental at times, especially in regard to Dr. Kanner, whom he really disliked. Still, the detail is exhaustive and I can imagine, after all the research Silberman did and the people he talked to, that it would have been difficult not to have an opinion.
Silberman didn't forget to talk to the people most directly affected by autism - the autistics and their families. We see how they are not so different in some respects - they fall in love, hold down jobs, are creative, etc. It wasn't too long ago that the medical establishment claimed none of that was possible for people diagnosed with autism. Heck, it was believed that only children were autistic, not adults. In recent years, adult autistics have begun to reclaim the autism movement, advocating for less time and money spent on 'cures' for 'fixing' them and for more spent on services helping them to cope and to function in our society as well as helping society to cope and to include people of diverse neurology.
I'd have liked more time spent on the whole concept of neurodiversity and how other neurological and cognitive conditions such as ADHD and dyslexia tie in. The whole concept of neurodiversity fascinates me and I will need to hunt up more information about it. I teach an age group that is pliable and open to being molded and helped. What can I do as teacher do to help and just as importantly, what should I not do?
"NeuroTribes" is not a quick or light read but it's well worth the effort. As I said, I learned a lot and I have a lot to think about. It's a good introduction to what autism is and is not and to changing our thinking about what is normal and what is different.
This book provides a detailed, thorough look at the history of autism, its permutations as well as the permutations of the definition of autism. Put me firmly in the camp, where the author also seems to be, that there isn't an epidemic of autism. What's changed is the definition and diagnosis for autism, from a strict, highly limited and rigid definition to a broader, more accommodating definition. As well, there's the fascinating, and to me highly likely, hypothesis that autism, especially certain forms of it, are just part of the normal continuum and one that veers to genius level at times. Maybe instead of 'fixing' autistics, and oh, there are some heartbreaking stories, we need to be focused on how to adjust the world to include them. Many inventors and some geniuses were autistic and Silberman, along with doctors and experts before him, posit that without those autistic gifts, the inventors and geniuses wouldn't have been capable of their achievements.
"NeuroTribes" is full of fascinating information, history, and theories. I read it on my Kindle and highlighted so much of the book, I may not be able to find what I'm looking for. At times, the history dragged on, there could have been less detail, but overall I was impressed with Silberman's thoroughness and I learned so much. I'll definitely recommend this to my co-workers and the administration where I teach. The author did get judgmental at times, especially in regard to Dr. Kanner, whom he really disliked. Still, the detail is exhaustive and I can imagine, after all the research Silberman did and the people he talked to, that it would have been difficult not to have an opinion.
Silberman didn't forget to talk to the people most directly affected by autism - the autistics and their families. We see how they are not so different in some respects - they fall in love, hold down jobs, are creative, etc. It wasn't too long ago that the medical establishment claimed none of that was possible for people diagnosed with autism. Heck, it was believed that only children were autistic, not adults. In recent years, adult autistics have begun to reclaim the autism movement, advocating for less time and money spent on 'cures' for 'fixing' them and for more spent on services helping them to cope and to function in our society as well as helping society to cope and to include people of diverse neurology.
I'd have liked more time spent on the whole concept of neurodiversity and how other neurological and cognitive conditions such as ADHD and dyslexia tie in. The whole concept of neurodiversity fascinates me and I will need to hunt up more information about it. I teach an age group that is pliable and open to being molded and helped. What can I do as teacher do to help and just as importantly, what should I not do?
"NeuroTribes" is not a quick or light read but it's well worth the effort. As I said, I learned a lot and I have a lot to think about. It's a good introduction to what autism is and is not and to changing our thinking about what is normal and what is different.
October 24, 2015
This book provides a thorough account of the troubled history of the psychiatric understanding of Autism Spectrum Disorder (this includes Asperger's syndrome). Unfortunately, most of this history in hindsight was incredibly blind to what now seems apparent as to the nature of the condition. Consequently, this long book spends most of its historical account describing what is now understood to be incorrect and spurious theories and treatments. The reader who makes it all the way through the book to the end will have a feel for the current understanding of autism. But I fear some readers will read about their own pet theory and read no further.
The first response that comes to my mind after completing this book is that the field of psychiatry owes multiple generations of families an apology for promoting bogus explanations for the causes and possible treatments of autism. For many years they were no better than quacks in their explanations. They blamed the victim by using terms such as “refrigerator moms” to provide a pseudo-scientific Freudian like psychoanalysis explanation of how autism was caused by lack of parental love.
The history of autism has a unfortunate tragic thread. Autism was observed and described by two different psychiatrists in the 1940’s, Hans Asperger in Vienna and Leo Kanner in Baltimore. Based on our current understanding of the autism spectrum the description proposed by Asperger was the more accurate of the two.
Asperger described it as a continuum of characteristics that included “social awkwardness, precocious abilities, and fascination with rules, laws, and schedules.” He understood many of these cases as causes for celebration for their ability to focus on esoteric issues that in many cases can be considered as genius. According to his understanding, the occurrence of autism was biological in origin and has been present throughout history in a portion of the population.
Kanner’s proposed definition of autism, in contrast to Asperger’s observations, was narrow and rare. He defined it as affecting only young children (anyone older was schizophrenic or psychotic), and though it was biological in origin it was activated by cold and withholding parents. With this definition he made the syndrome a source of shame and stigma.
The unfortunate accident of history placed Asperger on the wrong side during WWII. His work was thus ignored, and his research papers destroyed in a bombing raid. Kanner who was located in the United States became the recognized expert in the field. Consequently it has taken sixty years to recover from his incorrect description of autism.
This change in the definition of autism explains the reason for the apparent “epidemic” of autism in recent years. It is no longer a diagnosis of a sickness to be denied and avoided, but instead is now understood to be a naturally occurring condition that requires special training and assistance to learn to cope with it.
There is now a much more optimistic understanding of the future prospects for those with autism.
The first response that comes to my mind after completing this book is that the field of psychiatry owes multiple generations of families an apology for promoting bogus explanations for the causes and possible treatments of autism. For many years they were no better than quacks in their explanations. They blamed the victim by using terms such as “refrigerator moms” to provide a pseudo-scientific Freudian like psychoanalysis explanation of how autism was caused by lack of parental love.
The history of autism has a unfortunate tragic thread. Autism was observed and described by two different psychiatrists in the 1940’s, Hans Asperger in Vienna and Leo Kanner in Baltimore. Based on our current understanding of the autism spectrum the description proposed by Asperger was the more accurate of the two.
Asperger described it as a continuum of characteristics that included “social awkwardness, precocious abilities, and fascination with rules, laws, and schedules.” He understood many of these cases as causes for celebration for their ability to focus on esoteric issues that in many cases can be considered as genius. According to his understanding, the occurrence of autism was biological in origin and has been present throughout history in a portion of the population.
Kanner’s proposed definition of autism, in contrast to Asperger’s observations, was narrow and rare. He defined it as affecting only young children (anyone older was schizophrenic or psychotic), and though it was biological in origin it was activated by cold and withholding parents. With this definition he made the syndrome a source of shame and stigma.
The unfortunate accident of history placed Asperger on the wrong side during WWII. His work was thus ignored, and his research papers destroyed in a bombing raid. Kanner who was located in the United States became the recognized expert in the field. Consequently it has taken sixty years to recover from his incorrect description of autism.
This change in the definition of autism explains the reason for the apparent “epidemic” of autism in recent years. It is no longer a diagnosis of a sickness to be denied and avoided, but instead is now understood to be a naturally occurring condition that requires special training and assistance to learn to cope with it.
There is now a much more optimistic understanding of the future prospects for those with autism.
“Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.”
― Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
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December 16, 2021O tom, ako mozog funguje, keď nefunguje, ako si myslíme, že by fungovať mal, aj keď vlastne nefunguje o nič horšie, ako by fungoval, keby tak fungoval, ba ukazuje sa, že v mnohých situáciách funguje dokonca lepšie, ako by fungoval, keby nefungoval práve takto.
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August 10, 2019
Neurotribes is a groundbreaking book that for the first time gathers all the historical development of the discovery, theories, “treatment” and finally, an acceptance of autism as a neurological difference that is not a condition to be treated, but a state of being to be accepted and supported.
The history of autism ties in with the sordid history of mental illness in general: people institutionalized, bullied, mistreated. Dr. Asperger discovered in the thirties in Vienna that autistic children with remarkable abilities flourished when given individualized education in a way that engaged them. Yet his research was lost in the chaos and cruelty of Nazism and war that exterminated mentally ill people.
The biggest lasting damage done to autistic children and parents was the “refrigerator mother” theory, that blamed autism on the parents who were cold or overly involved. This resulted in the social isolation of parents with autistic children, as their friends shunned them for doing this to their children - especially if they would not give their children up into an institution that would “rescue” the child from them. Autistic children were considered imbeciles and were given no education, and removed from their home, often ended up catatonic, never learning to speak or taking care of themselves.
Autism was also considered a childhood disease. This was changed by the appearance of Temple Grandin, who was the first adult who admitted to be autistic and gave an insight into autistic thinking, and a path to a fulfilled adulthood, when given an education and opportunity. She also drew attention to her special abilities: she can simulate and test her machinery in her head, which none of her collegues can do.
Thankfully attitudes are changing, although there is a long way to go. We now recognize that autism is a spectrum, and that every autistic person is different. It is also becoming common knowledge that many of the brightest scientists, engineers, and computer programmers are, and were, on the spectrum somewhere, and their different way of thinking might have pushed humanity along. Furthermore, our society is becoming more reliant on these skills as computer technology, and a way of abstract thinking that comes with it, is taking an increasing role in our lives.
Thanks to the Disabilities Act, autistic children are no longer denied education. Parents have support groups and are discovering not just the challenges, but the unique opportunities autism presents. Autists are standing up for their rights and are raising awareness of their needs to be able to function in society.
There is a long way to go still. As a parent of a kid on the spectrum, I sincerely hope that our society learns to embrace neurodiversity, and recognize that certain individuals with social problems are not rude or lack empathy, they just don’t know how to navigate this world. We can help them. In return, they can help us in ways we are unable to see.
The history of autism ties in with the sordid history of mental illness in general: people institutionalized, bullied, mistreated. Dr. Asperger discovered in the thirties in Vienna that autistic children with remarkable abilities flourished when given individualized education in a way that engaged them. Yet his research was lost in the chaos and cruelty of Nazism and war that exterminated mentally ill people.
The biggest lasting damage done to autistic children and parents was the “refrigerator mother” theory, that blamed autism on the parents who were cold or overly involved. This resulted in the social isolation of parents with autistic children, as their friends shunned them for doing this to their children - especially if they would not give their children up into an institution that would “rescue” the child from them. Autistic children were considered imbeciles and were given no education, and removed from their home, often ended up catatonic, never learning to speak or taking care of themselves.
Autism was also considered a childhood disease. This was changed by the appearance of Temple Grandin, who was the first adult who admitted to be autistic and gave an insight into autistic thinking, and a path to a fulfilled adulthood, when given an education and opportunity. She also drew attention to her special abilities: she can simulate and test her machinery in her head, which none of her collegues can do.
Thankfully attitudes are changing, although there is a long way to go. We now recognize that autism is a spectrum, and that every autistic person is different. It is also becoming common knowledge that many of the brightest scientists, engineers, and computer programmers are, and were, on the spectrum somewhere, and their different way of thinking might have pushed humanity along. Furthermore, our society is becoming more reliant on these skills as computer technology, and a way of abstract thinking that comes with it, is taking an increasing role in our lives.
Thanks to the Disabilities Act, autistic children are no longer denied education. Parents have support groups and are discovering not just the challenges, but the unique opportunities autism presents. Autists are standing up for their rights and are raising awareness of their needs to be able to function in society.
There is a long way to go still. As a parent of a kid on the spectrum, I sincerely hope that our society learns to embrace neurodiversity, and recognize that certain individuals with social problems are not rude or lack empathy, they just don’t know how to navigate this world. We can help them. In return, they can help us in ways we are unable to see.
May 8, 2018
As a parent of a child who is on the spectrum and has many challenges, I try to devour any book or information that comes my way about ASD. Anything new or old that will help me in assisting my child to develop and grow. So, when I stumbled upon NeuroTribes, I was very excited to say the least.
I appreciate the fact that this author took the utmost time and care to thoroughly research and put forth a book that is quite informative. It broke my heart and I was sick to my stomach upon reading about the atrocities that occurred during the Holocaust to those with special needs/disabilities, regardless of their ethnicity. I couldn't believe that even German families would offer up their children to the Nazi's without question, all because they were different and not capable of being part of Hitler's vision...ugh, I'm sickened by it. Also, the fact, that the prominent scientist of that time and in that region silently allowed it to happen and were willing participants in the experimentation and extermination i.e. basically signing off on the death warrants by transferring them to another facility, of hundreds of thousands, many of those just children on the spectrum, knowing full well what was to become of their fate. This author dared to mention it and I'm glad he did.
All in all, it was good read. However, I did find it too wordy and extremely long, not as smooth and fluid in collating a narrative that was readable and relatable. I guess it's difficult when you are dealing with history and facts to try to find some emotion. But as a parent of a child with Autism, that is what I look for i.e. being able to find that connection. I did with some stories but only up until a point.
The one thing I have to say on books about Autism is they rarely touch on those like my son. Those on the moderate to severe range who have many learning difficulties and intellectual disabilities, or have severe speech delay. My son would have been killed during WWII and that's the truth. Instead, the belief that all are Rain Man and are going to change the world through new scientific research and technical innovation, is something we are all forever and desperately trying to shed light on. It is called a spectrum for a reason and to please be aware and mindful of that.
Thank you to the author for writing this book as well as shedding light on Autism. If anything, it will bring forth understanding and change.
I appreciate the fact that this author took the utmost time and care to thoroughly research and put forth a book that is quite informative. It broke my heart and I was sick to my stomach upon reading about the atrocities that occurred during the Holocaust to those with special needs/disabilities, regardless of their ethnicity. I couldn't believe that even German families would offer up their children to the Nazi's without question, all because they were different and not capable of being part of Hitler's vision...ugh, I'm sickened by it. Also, the fact, that the prominent scientist of that time and in that region silently allowed it to happen and were willing participants in the experimentation and extermination i.e. basically signing off on the death warrants by transferring them to another facility, of hundreds of thousands, many of those just children on the spectrum, knowing full well what was to become of their fate. This author dared to mention it and I'm glad he did.
All in all, it was good read. However, I did find it too wordy and extremely long, not as smooth and fluid in collating a narrative that was readable and relatable. I guess it's difficult when you are dealing with history and facts to try to find some emotion. But as a parent of a child with Autism, that is what I look for i.e. being able to find that connection. I did with some stories but only up until a point.
The one thing I have to say on books about Autism is they rarely touch on those like my son. Those on the moderate to severe range who have many learning difficulties and intellectual disabilities, or have severe speech delay. My son would have been killed during WWII and that's the truth. Instead, the belief that all are Rain Man and are going to change the world through new scientific research and technical innovation, is something we are all forever and desperately trying to shed light on. It is called a spectrum for a reason and to please be aware and mindful of that.
Thank you to the author for writing this book as well as shedding light on Autism. If anything, it will bring forth understanding and change.
January 19, 2020
My husband and I read this book together. We have a grandson who is autistic and we wanted to learn about the condition.
The book gives many examples of those who are autistic and functioning. There is also a lot on the history of autism and the autism movements those with autism have started.
My main lesson from this book was learning that the families of autists should not pray for a cure as much as they should find and encourage the strengths of the child.
My grandson is 4 years old and whether he will become functioning is still not known. My prayer is that he functions well some day.
4 stars
The book gives many examples of those who are autistic and functioning. There is also a lot on the history of autism and the autism movements those with autism have started.
My main lesson from this book was learning that the families of autists should not pray for a cure as much as they should find and encourage the strengths of the child.
My grandson is 4 years old and whether he will become functioning is still not known. My prayer is that he functions well some day.
4 stars
August 19, 2015
As a parent who raised an autistic daughter through much of the later history Silverman describes, I loved this book. The early history of diagnosis and treatment was fascinating. Each time he delved into the background or quoted a leading expert from the field, I felt like I was saying hello to an old friend. Like many desperate parents, I met these people at conferences, read their books, tried some of their techniques, and took hope from the smallest "improvements" in my child's behavior. The earliest history of abuse, neglect, and institutionalization of autistics broke my heart. I was aware, but Silverman brought it home with his graphic descriptions and in depth anecdotes of real people. Having grown up clumsy, socially awkward, and a SF fan, I can only shudder and be grateful my gifts outweighed my deficits in that awful time.
My favorite part of the book was the last three chapters where the author delved into the more recent activities of autistic adults as they took (and are still taking) control of the tools available to them to build their own communities and advocate for more services, supports, and tolerance. I came to the conclusion early that my daughter would thrive in a more accepting environment that built on her strengths, rather than focusing on "fixing" her. Autistics all along the spectrum have unique gifts to contribute to society...if we only let them.
I highly recommend this book to anyone who has a relative or friend on the spectrum or is interested in the disability rights movement. Frankly, anyone interested in building a more inclusive society would benefit from the insights in this book. Thank you, Mr. Silberman, for taking on the monumental task of documenting the legacy of autism and executing it with thoroughness and sensitivity. I'm looking forward to a world that values neurodiversity.
Note: I received an advanced reading copy of this book from the publisher in exchange for an honest review.
My favorite part of the book was the last three chapters where the author delved into the more recent activities of autistic adults as they took (and are still taking) control of the tools available to them to build their own communities and advocate for more services, supports, and tolerance. I came to the conclusion early that my daughter would thrive in a more accepting environment that built on her strengths, rather than focusing on "fixing" her. Autistics all along the spectrum have unique gifts to contribute to society...if we only let them.
I highly recommend this book to anyone who has a relative or friend on the spectrum or is interested in the disability rights movement. Frankly, anyone interested in building a more inclusive society would benefit from the insights in this book. Thank you, Mr. Silberman, for taking on the monumental task of documenting the legacy of autism and executing it with thoroughness and sensitivity. I'm looking forward to a world that values neurodiversity.
Note: I received an advanced reading copy of this book from the publisher in exchange for an honest review.
May 25, 2021
Two hundred pages in, and I gave up. I'd heard so many great things about this book and how essential and ground-break it was, but ugh. I am exhausted. So far it's mostly been a history of how autistic children have been mistreated, abused, tortured, and gruesomely murdered. Sometimes by their family members. Sometimes by the state. Sure, yes, this history is important, but I still can't get over the emphasis on the words, world-view, and biography of those doing harm. Literally, I think Nazis have been quoted more often then autistic children or adults.
And I think that's an important distinction. This isn't so much a history of autistic people but a history of the reaction of others to autistic people. The hopeful, upbeat description for this book REALLY doesn't match the contents.
And I think that's an important distinction. This isn't so much a history of autistic people but a history of the reaction of others to autistic people. The hopeful, upbeat description for this book REALLY doesn't match the contents.
November 22, 2017
I wanted to read ‘Neurotribes’ as I didn’t really understand what autism was. It seems to be mentioned quite frequently in the media, yet never really defined. Silberman’s book explains why this is: the exact nature of autism is poorly understood, which is why the concept of a spectrum was adopted. The concluding chapter summarises this in the same eloquent style that characterises the rest of the book:
As far as I could tell, it isn’t understood what makes a human brain autistic or not, so the condition is known entirely through its symptoms. Although genetic markers have been found, I very much doubt autism could show up in a brain scan. Apparently research has tended to treat it as a disease needing a cure, rather than as a different way of being that requires support. By recounting the history of autism as a concept, Silberman demonstrates how people on the autistic spectrum have repeatedly been caught up in wider social panics, especially in early childhood. This is linked with the wider problem that Western society has with mental illness. In fact, I would be very interested to read a cross-cultural comparison of attitudes to the autistic spectrum, in the vein of Crazy Like Us: The Globalization of the American Psyche.
Silberman tells the story of autism clearly and with great compassion. The early chapters of the book are horrifying, in particular the account of how Nazis systematically murdered children in medical institutions. Even after the worst brutalities of institutionalism ended, recent history is full of the tragedy of anti-vaccination hysteria. Yet overall the book is uplifting, as it demonstrates how understanding and sympathy for differences in perceptions of the world can be fostered. I found it fascinating.
Most researchers now believe that autism is not a single unified entity but a cluster of underlying conditions. These conditions produce a distinctive constellation of behaviour and needs that manifest in different ways at various stages of an individual’s development. Adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938. He was equally prescient in insisting that the traits of autism are ‘not at all rare’.
As far as I could tell, it isn’t understood what makes a human brain autistic or not, so the condition is known entirely through its symptoms. Although genetic markers have been found, I very much doubt autism could show up in a brain scan. Apparently research has tended to treat it as a disease needing a cure, rather than as a different way of being that requires support. By recounting the history of autism as a concept, Silberman demonstrates how people on the autistic spectrum have repeatedly been caught up in wider social panics, especially in early childhood. This is linked with the wider problem that Western society has with mental illness. In fact, I would be very interested to read a cross-cultural comparison of attitudes to the autistic spectrum, in the vein of Crazy Like Us: The Globalization of the American Psyche.
Silberman tells the story of autism clearly and with great compassion. The early chapters of the book are horrifying, in particular the account of how Nazis systematically murdered children in medical institutions. Even after the worst brutalities of institutionalism ended, recent history is full of the tragedy of anti-vaccination hysteria. Yet overall the book is uplifting, as it demonstrates how understanding and sympathy for differences in perceptions of the world can be fostered. I found it fascinating.
September 7, 2015
"Parenthood" the TV show shed more light on ASD (Autism Spectrum Disorder which includes Asperger) than this very long book did. If your interested in ASD, I would recommend that show instead. Max, the Asperger character on the show, demonstrates more about life on the Spectrum than this book does. I remember the scene where Max is running for class president and his sister tells him why he is so special, along the lines that he is totally focused, sees the world differently and never needs to get along just in order to get along. Also, Max and his interaction with Hank (played by Ray Ramono), the photographer, and how the photographer knows how to interact instinctively with Max because Hank obviously is on the spectrum too.
As for this book, the author gives the history of the Disorder and our understanding by putting the events into the context of the time, but doesn't really relate them to our current understanding. For example, he brings up someone named Jenny McCarthy early in the book, somebody like most Americans I had never heard about before she started linking Autism with vaccines. I for one, think that Dante should put into his Eighth circle of hell (Fraud) people like Jenny McCarthy (and by extension Jim Carrey) because that's were they belong for the misery they bring to the world for the fraud they are perpetrating upon us. The author does reject the anti-vaccine idiots in the later part of the book, but I don't think he mentioned Jenny McCarthy (may she greet other vaccine deniers in the eighth circle of hell) by name in the later part of the book.
The author spends a lot of time on the pseudo-scientific Freudian like psychoanalysis that led to things such as "refrigerator moms" causing Autism (always blame the victim, or if you can't blame them, blame the mother). I really enjoyed the book, "Shrinks: The Untold Story of Psychiatry". There's a lot of overlap between these two books. Except "Shrinks" would relate what was historically being done wrong to what was finally being done right. This book doesn't do that.
The author also had a long section on how Engineers, Sci-Fi enthusiast, nerds in general are almost always people on the spectrum and how fortunate they are to be on the spectrum (as for me, I don't believe those kind of people are almost always on the spectrum, but I could be convinced with data but none was provided). The book does point out that neuro-typicals can be considered a Disorder just as easily. After all, who wants to always want to be conforming for the sake of conforming, valuing social interaction over ones own company, or never being able to understand the details that make up the whole. All in contrast to the neuro-diverse who don't fully understand the rules of the game for conforming, get their strength while being alone, and are able to understand the details and logically pull apart the pieces that make up the whole, but there is a price to be paid to be a nerd on the spectrum especially when you are young, and for the young conformity is everything and to think different(ly) makes you not fit in and later on that emotionally oriented thinking process that you possess limits you to understanding emotions only by clues you see in the physical world not from the internal states of others or yourself.
I thought "Shrink" covered how psychiatry corrected itself better than this book covered how the science of autism corrected itself. There is a lot of overlap between the two in the sense that both books show how American Psychiatry (and Psychology) got off the rails with psychoanalysis (Freudian thought) and ended up correcting themselves by changing the paradigms they were using. When a science such as psychology doesn't relate their paradigms to the real world, the science ends up becoming a pseudo-science. That's what happened with the science of Autism (and psycho-analysis). The problem with this book is it dealt mostly with the false paradigms and didn't dwell enough on how the science has corrected itself. Watch "Parenthood" instead.
As for this book, the author gives the history of the Disorder and our understanding by putting the events into the context of the time, but doesn't really relate them to our current understanding. For example, he brings up someone named Jenny McCarthy early in the book, somebody like most Americans I had never heard about before she started linking Autism with vaccines. I for one, think that Dante should put into his Eighth circle of hell (Fraud) people like Jenny McCarthy (and by extension Jim Carrey) because that's were they belong for the misery they bring to the world for the fraud they are perpetrating upon us. The author does reject the anti-vaccine idiots in the later part of the book, but I don't think he mentioned Jenny McCarthy (may she greet other vaccine deniers in the eighth circle of hell) by name in the later part of the book.
The author spends a lot of time on the pseudo-scientific Freudian like psychoanalysis that led to things such as "refrigerator moms" causing Autism (always blame the victim, or if you can't blame them, blame the mother). I really enjoyed the book, "Shrinks: The Untold Story of Psychiatry". There's a lot of overlap between these two books. Except "Shrinks" would relate what was historically being done wrong to what was finally being done right. This book doesn't do that.
The author also had a long section on how Engineers, Sci-Fi enthusiast, nerds in general are almost always people on the spectrum and how fortunate they are to be on the spectrum (as for me, I don't believe those kind of people are almost always on the spectrum, but I could be convinced with data but none was provided). The book does point out that neuro-typicals can be considered a Disorder just as easily. After all, who wants to always want to be conforming for the sake of conforming, valuing social interaction over ones own company, or never being able to understand the details that make up the whole. All in contrast to the neuro-diverse who don't fully understand the rules of the game for conforming, get their strength while being alone, and are able to understand the details and logically pull apart the pieces that make up the whole, but there is a price to be paid to be a nerd on the spectrum especially when you are young, and for the young conformity is everything and to think different(ly) makes you not fit in and later on that emotionally oriented thinking process that you possess limits you to understanding emotions only by clues you see in the physical world not from the internal states of others or yourself.
I thought "Shrink" covered how psychiatry corrected itself better than this book covered how the science of autism corrected itself. There is a lot of overlap between the two in the sense that both books show how American Psychiatry (and Psychology) got off the rails with psychoanalysis (Freudian thought) and ended up correcting themselves by changing the paradigms they were using. When a science such as psychology doesn't relate their paradigms to the real world, the science ends up becoming a pseudo-science. That's what happened with the science of Autism (and psycho-analysis). The problem with this book is it dealt mostly with the false paradigms and didn't dwell enough on how the science has corrected itself. Watch "Parenthood" instead.
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